Turns out that the neck and back pain are probably stress related, aggravated by new pillows, cold weather, and working at the computer. I asked the APRN about it at my primary doctor’s office and she brushed me off, as usual. When it got really bad—I mean, brought me to tears bad—I went to the ER. They brushed me off too, until they saw my x-rays. Although there was no fracture or anything, the doctor could tell that I was in a lot of pain because of how ramrod straight my neck was. He said they usually see that in people with whiplash; normally, the spine is slightly curved in the neck. He sent me away with Vicodin, which makes me vomit. All I wanted was Flexeril. When I asked him if I could cut the Vicodin pills in half to avoid them irritating my stomach, he actually laughed in my face and told me that I needed to go home and chill out.
Nice, right? But this is nothing new.
A friend and then a relative gave me some Flexeril to get me through, and it worked like magic (as long as I actually relaxed, too*). During my followup with my rheumatologist, I told him that I know it’s not really okay to share prescriptions, but I just wanted to make sure it was okay to take Flexeril with my other medications. He told me it was okay, and suggested I take it at night because it can make me drowsy. He also told me to not drive on it. I don’t remember him saying he was going to write me a prescription for it, but when I got to the pharmacy, it was there.
So few doctors have actually listened to me over the past decade, never mind tried to treat me, that I actually cried in the middle of the pharmacy aisle. I’ve never been so happy to take medicine.
During my appointment, we discussed how I’m doing on Plaquenil. My joint pain is much, much better, and he said this is around the time when Plaquenil starts to work. Since I can’t stay on Prednisone for very long, I need to come off of it. He asked me what I thought about that.
I just want to note how much that means to me, that he includes me in the conversation and treatment plan. I initially wasn’t sure about him, since he seemed to be brushing me off, but ever since our phone conversation, he’s shown me that he really cares. I think a lot of doctors do, but they can sometimes forget what it’s like to be on the other side—the patient’s side.
“Well,” I said, “I’m kind of nervous about coming off the Prednisone, because I don’t want the pain to come back.” I’ll be the first to tell you that my biggest fear is my pain. Not the 5/10 pain, but the 10/10, can’t move, can’t function, feel like I’m dying pain.
He nodded, then explained to me that he isn’t just taking me off of it. We’ll be slowly tapering down, to find the minimum dose that I can stay on while the Plaquenil starts working.
In short: I won’t be just coming off it. The pain won’t be rushing right back in like it has in the past.
I’m now on 7.5mg of Prednisone a day (previously I was on 10mg). My prescription is 5mg pills; I take one and a half every morning. The brain fog struggle is real, because I had to ask him to explain to me three times how I’m supposed to make 7.5mg out of 5mg pills. But he patiently explained each time, never got annoyed with me, and when I apologized for being so slow, he gently told me that his job is to clarify for me.
I really can’t express how wonderful this man is.
A decade of chronic illness and doctor merry-go-round has made me very skeptical about doctors. I’ve been mistreated so many times, it’s my knee-jerk reaction to mistrust them. But I’m glad that I shared my concerns with him and expressed how much I need someone to figure this out with me.
Sometimes, change needs to come from within.
Though I was nervous about tapering down, I’ve been on the lower dose for a week now and I feel great. Plaquenil is doing its job! Don’t get me wrong. I can still aggravate my joints by overdoing it. (I do.) I can still have bad pain days. (I have.) It’s still possible that I can have another flareup. It’s still possible that my Undifferentiated Connective Tissue Disease is pre-Lupus. I still very much fear my pain.
But it’s also starting to feel possible to get my life back.
For the first time in a decade, I feel hopeful again.
We Need Your Help
I’m feeling better, but I’m still not able to return to the regular workforce. On top of that, my husband recently had surgery that will keep him out of work for three weeks at the minimum, six at the most. He doesn’t have a lot of sick time available and we’re already struggling. We really appreciate any help you can give us.
*Ha! Considering I’m an indie author and have to work my ass off for every dollar I make, I’m not very good at just resting. Still, the more I stress about money and my production schedule, the more my neck and lower back hurt. I’ve also been stressing about my health insurance and all of the insane things happening in my country, which I’m sure hasn’t helped. I’ve had to actively work at keeping my stress levels down by using coping methods, relaxation techniques, and unplugging. And buckling down to write a new book.
A post shared by Elizabeth Barone (@elizabethbarone) on
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.
A post shared by Elizabeth Barone (@elizabethbarone) on
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.
My goal for my rheumatology appointment this morning was to walk out with some kind of progress. Any progress. I just wanted to move toward getting my life back. That’s all I’ve wanted for the past decade.
On Thanksgiving, a week before my followup appointment with my rheumatologist, I’m so miserable I consider going to the ER instead of family dinner. Every joint in my body is stiff and agonizingly sore. The pain keeps me awake at night. I’m so stiff, my husband has to help me get dressed. I’m 28 years old and I was raised by strong women; I’m used to doing everything myself. I feel powerless. Mike feels useless. We go to Thanksgiving dinner under a blanket of defeat.
My sister-in-law is having her own health troubles. I want to help her and be there for her, but I’m nearly incapacitated. My mother-in-law takes her to the ER, and I stay behind with the guys to finish and eat dinner. While I’m taking my plate to the sink, my left ankle goes out.
It’s so sore, I can’t bear weight on it. I swallow back tears; surrounded by a bunch of tough guys, I don’t want to cry like a little girl. A well-meaning family member gives me a Percocet to get me through the rest of the day. It helps, but it’s strong; by the time I get to my grandmother’s, I’m in a haze and I hate it. My body doesn’t have to fight off pain anymore, so I can finally rest, but I struggle to stay awake during dinner.
My aunt brings me home early, and the second I get home, I start vomiting. I’m not used to medicine like Percocet. It’s too strong. I throw up for hours, on my aching hands and knees on the bathroom floor in front of the toilet. The pain comes roaring back, and I have to limp-run to the bathroom every half hour. By some miracle I make it to the toilet every time.
By the time Mike gets home from work, I’m dehydrated and exhausted. I probably should go to the ER, but I’m disoriented. Mike brings me ginger ale and I struggle to keep it down. I curl into a ball in bed and hope the morning brings relief.
I stop vomiting, but the pain and stiffness keep me in a haze of hopelessness.
A post shared by Elizabeth Barone (@elizabethbarone) on
It’s two nights before my rheumatology appointment, and I can’t sleep. My body is exhausted by pain, fatigue, and stress, but my mind is wired with anxiety. I’m worried that once again my appointment will end in disappointment, that I’ll once more feel brushed off, that I’ll still feel like I’m just spinning my wheels.
I try everything I can think of to fall asleep.
Cleaning, to work off that anxious energy. I do dishes, soak kitchen towels in bleach in a bucket, and fill my sink to soak cutting boards in bleach. I consider sweeping and mopping, but my body isn’t up to it. I’m tired all the way down to my bones. Even with pain medicine, my joint pain is agonizing.
In bed, I play Bejeweled on my iPhone to quiet my mind, and watch ASMR videos to help me drift off, but it’s useless.
I toss and turn all night, unable to get my body comfortable, unable to shut off my worries.
One day before my appointment, I wake up anxious. I want to tackle my To Do list; I have a lot of work to do but it will also help me get my mind off my pain and anxiety. Everything that can go wrong does. I spend hours trying to fix my antivirus; its firewall is blocking my internet. All I want to do is work off my anxiety, which grows by the second because I can’t fix my computer and I’m falling even more behind on my To Do list.
By the time I solve the issue, my fingers and wrists are so stiff and sore, I barely get any writing or any other work done. Instead of cooking the chicken parmesan dinner I’d planned, I make ramen and binge Buffy the Vampire Slayer on Netflix. I need a hero.
After dinner, I spend hours writing up a seven-page document for my rheumatologist. I define my goals, outline my medical history (completely healthy before this illness set in), list my symptoms and trouble joints, describe treatments I’ve tried, tally activities that are affected by my chronic arthralgia, stiffness, and fatigue, catalog various labs that have popped up over the past nine years. My hope is that, by laying all this out for my rheumatologist, he can piece together whatever it is that’s wrong. Going through the document makes me realize how very bad this disease actually is.
Before I got sick, I played on a city softball team. I was the catcher. I had to stop playing because I couldn’t move fast enough to make bases or catch balls.
Before I got sick, I worked multiple jobs and at one point even had my own web design business. I had to leave the workforce because, sitting or standing, my body couldn’t handle the demands.
After I got sick, I went back to school to become an elementary school teacher. I was seeing my first rheumatologist, Dr. Greco, and the medication I was on had nasty side effects. The pain and fatigue pulled me further and further behind on my studies; both my grades and GPA plummeted. My fellow students either ignored or made fun of me. A girl who I thought was my friend ditched me on our way to an exam, and started treating me badly. The stress of being sick and trying to get through school was too much on my body. I withdrew and never went back.
Those are only three of the things I’ve lost.
I print out two copies of the document—one for me and one for Dr. S—and prepare to go into battle the next morning. Once again, I’m fighting to get my life back. I’m fighting to advocate for myself, to be heard. To not be erased.
Right as I’m about to lie down, my hypoglycemia flares and my blood sugar plummets. Tramadol wears off and the pain comes roaring back up to a 9/10. I make more ramen. Midnight comes and passes. I lie down again and calm myself with ASMR videos and one of the same threes audiobooks I listen to every night. Eventually, I fall asleep, but the pain wakes me intermittently. I can’t get comfortable.
My mind starts to run through scenarios: what I’ll say to Dr. S, the kinds of questions I want to ask, the what-ifs. Usually I just sit with my anxiety, let the feelings in, and examine them. But I have to get to sleep so I can be fresh and on my game in the morning. I slam down steel shutters, bottling up my worries. But they leak in anyway.
Between the pain and anxiety, I barely rest.
The morning of my appointment, I wake up over two hours before I’m supposed to be there. The plan is to have enough time to sit and let my joints un-stiffen. Of course, nothing goes according to plan.
My alarm goes off but I’m foggy and my bones scream for more sleep. I set it for another half hour and drift off immediately. It seems like only minutes later my alarm goes off again.
I have to get up, or I won’t have enough time.
Even though I’m too nervous to eat, I make oatmeal and coffee. I eat half my bowl and drink a third of my coffee. My mouth is so dry. I take my morning medication—vitamin D and one of my two daily Tramadol—and slowly dress, do my makeup and hair, and gather my papers and planner. Mike is off from work, so he drives me. A few days before, I asked him to come into the exam room with me and fight for me, to back me up on everything I’m saying—to explain how he has to help me do simple things like get dressed, to parrot what I tell the rheumatologist. It’s a proven fact that doctors take men more seriously. Mike is skeptical, but agrees to help me advocate for myself.
I leave our apartment armed with my seven-page document and husband. The only weapon I’ve ever had are my words. On the drive over, I mentally repeat affirmations: I am strong, I will accomplish my goal of progress, I am beautiful, I can do this. I lift my chin while fending off doubts.
I’m still worried that my rheumatologist will brush me off again.
In the exam room, he gets right down to business. He remembers our phone conversation where I all but begged him to help me, to listen to me, to sleuth this out with me. He starts off by reviewing my last labs and our phone conversation about trying Plaquenil. I’d intended to start off by asking him if we could go over the last decade, but didn’t want to interrupt him. He sees my papers, though, and asks if I have something for him. I pass over his copy.
I explain that I thought it might be helpful if we reviewed everything. He seems surprised and impressed. So we do. He asks questions. I give him answers, referring to my document when the fatigue and brain fog set in and I can’t remember. We talk about how I have flareups and remissions, about how the stiffness and intense pain lasts hours in the morning and then I have a small window midday when it calms down, how I’ve taken Prednisone in the past and it helped kick my flareup both times.
Dr. S says he definitely doesn’t think this is Fibromyalgia, because of the stiffness. But he also explains that usually with Lupus, there are other markers. I only have the anti-dsDNA, so it’s difficult to diagnose. But there’s definitely something autoimmune going on. I tell him about how Dr. Greco, my first rheumatologist, explained to me that I’m on the very bottom of the bell curve; something is definitely brewing, but I’m right on the edge and it’s hard to tell what just yet. Dr. S says that’s exactly what he thinks, and that he wants to monitor how this progresses.
But he also doesn’t want me to be in so much pain, and to be unable to perform daily activities. I tell him that’s all I’ve wanted for the last nine years—to get some of my life back.
He decides to start me on Plaquenil, cautioning me that it could take up to six months for me to notice any difference. We both have to be patient, he says. He suggests I keep a diary: rate the pain, list activities I’m having a hard time doing, etc. That way we can track how well Plaquenil is working. I now take 200mg of Plaquenil, twice a day—400mg in total. On this, I can expect very low side effects; he said maybe one day of diarrhea. It’s nothing like Sulfasalazine—no headaches or metallic taste, and no liver and kidney damage.
He’s also got me on Prednisone for a few weeks, to help kick the flareup while Plaquenil starts working, since we know it’s worked in the past. I’m taking 10mg of Prednisone every morning. It’s a low dose, so I can expect less intense side effects. In the past it’s made me dizzy and sweaty, and made my heart race and kept me up all night. I’m to take it first thing in the morning, to lower the chance of it keeping me awake.
I thank him profusely. Along with this new DMARD, he’s given me hope.
Mike and I go to our favorite sushi restaurant to celebrate. They have a lunch special and I owe him money for the printer ink he bought me the other day. We reconnect over sushi and when I get my fortune, I’m delighted.
“You have had a good start,” it says. “Work harder!” This is heartening.
A post shared by Elizabeth Barone (@elizabethbarone) on
We head over to the pharmacy next. I go in without my wallet, because I’m only there to pick up my prescriptions and my insurance completely covers them, but when I walk in, there’s a display full of live Christmas cactuses. Their pink blooms are beautiful, and they remind me of my Biz Noni—who always had one. I can’t walk out of there without one. They’re only $3.99, but with my savings card I end up saving a dollar.
I walk out with all kinds of new hope in my hands, hands that can’t hold much these days but are so open to catch whatever tools life wants to give me to fight. Like I told my rheumatologist, I’ll do just about anything to feel better. I just need someone to give me a chance.
In the car, on the way home, I take my first dose.
Prednisone still tastes awful going down. I’d forgotten how bad it tastes. But the Plaquenil has no taste and, unlike the SSZ, it doesn’t leave a film on my hands.
It tastes like hope.
If you’d like to help, I currently have a GoFundMe open to help my husband and I catch up on our bills. You can donate here. If you prefer, you can donate through PayPal. Or you can purchase any of my books, which not only supports me but also my writing! Paperbacks coming in 2017.
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.