When I got sick 10 years ago, I wasn’t planning on getting sick. I was actually planning to grow my web design business, save up the good salary I was making, and have a family. I wanted three kids. I’d only just started dating Mike, so I can’t say I was planning on marrying him, but I was an 18-year-old woman with hopes and dreams. I didn’t plan on getting sick. My goal was not to leave the workforce and become homebound because of my illness. I wanted to travel, to eventually set down roots and buy a house. I didn’t plan on going on state insurance because my husband and I couldn’t afford his company’s plan. I didn’t foresee setting aside my dream of having a family.
Let me be clear: I love my life. I’m happy that, even though I’ve lost a lot, I have been able to pursue my other dream—being a storyteller—even while bedridden. But I did not plan on getting sick.
No one does.
Mothers don’t hope to give birth to a baby who loses a kidney before he can even walk. Veterans don’t think they’ll spend their retirement years battling cancer instead of enjoying their grandchildren. Hardworking women who once worked multiple jobs don’t pencil in getting emphysema and pneumonia on their schedule.
But it happens, because life happens.
Today the Senate voted to continue working to repeal Obamacare and replace it with Trumpcare. The proposed bill blocks people with pre-existing conditions from getting insurance, takes away funding from state insurance that helps low-income people, and all but cripples healthcare assistance for the elderly and disabled.
All of this right smack in the middle of my disease changing.
Aside from worrying about family members and friends who will definitely be affected by the Senate’s decision today—possibly mortally so—I’m concerned about me. Because not a day goes by that I don’t wonder how different things might be for me if I hadn’t gotten sick. Would I have a mortgage and three kids? Ironically, if I hadn’t gotten sick, I could afford to pay for my healthcare.
I didn’t get a chance to really blog about it, but I’m having bladder and nerve issues that may be related to my UCTD—that may indicate that it’s developing into Lupus. I’m waiting on labs that my new rheumatologist ordered to check on my kidneys. I’ll probably be seeing a urologist to figure out what’s going on with my bladder; a neurologist ruled out carpal tunnel and said she thinks my nerve pain is from my autoimmune disease. My rheumatologist said that Plaquenil can be great for some things but not others; I may be looking at adding another medication to my regimen.
More tests, followups, and medications that I cannot afford out of pocket.
Under Trumpcare, I’d be blocked from getting insurance because of my pre-existing condition. Right now, I truly don’t know what’s going to happen to me.
And I’m trying like hell right now to not think about the people I know who will actually die without their medications and treatments. Because if I do, I won’t be able to breathe.
Today my country made a shameful, disgusting decision—all because part of the government can’t stand that a black president dared to try to help sick, disabled, and low-income people. They can’t bear to let Obamacare exist, just like they couldn’t bear to allow the original bill to pass. Instead of trying to fix the things that are wrong with Obamacare—like the annual fee for uninsured people that, ironically enough, the GOP helped create because they bickered over the original bill—they’d rather burn it all down, out of spite. They’d rather not examine the exorbitant cost of healthcare and medication in this country. And now 24 to 32 million Americans face losing healthcare. Of those 32 million, a good percent of them will die without it.
I cried all afternoon. My eyes are swollen, my heart is broken, and my autoimmune disease continues to attack my connective tissues, nerves, and bladder. I don’t know what’s going to happen to me or my loved ones. I keep trying to find some hope tonight, something to hold onto. Because I’m one step closer to losing my healthcare, but it’s not over yet.
I’ve been taking Plaquenil and Prednisone for my UCTD for over four months now. For a little while, I was having some moderate anxiety: fatigue, feeling frozen, heaviness in my legs. I thought it might be Plaquenil (or even Tramadol withdrawal), but I haven’t had any of those symptoms in a while and I’m still taking Plaquenil (with Tramadol as needed). I think I might’ve freaked myself out about it, too, and it sort of became this brutal cycle. But my anxiety is relatively tame and my meds are working—all good things.
The temperatures and barometric pressure have been all over the place lately, as usual in New England. It snowed in March and we’ve been getting rain this month, along with random hot days. This has been killing me, but the difference now is—thanks to Plaquenil and Prednisone—I just take some Advil and Tramadol, and it’s enough. Usually, anyway.
Sometimes it’s not.
I’ve been having lots of trouble with my wrists and hands lately. For the past decade, I’ve struggled with severe pain in all of the joints in my hands, but this is a different ball game entirely. For quite some time now, I’ve been getting numbness in my ring and little fingers (which I’ve been ignoring, haha). In the past few weeks, though, it’s progressed to burning, tingling, and icy-weird-ness in both of my wrists and all throughout my hands. It sounds like carpal tunnel, which could easily be caused by the inflammation in my tendons.
I kinda always knew this would happen, eventually. I mean, I am an author, and before that I was a web designer. There are few hours of the day that I’m not hacking away at the keyboard. I guess I just thought I was years away from having to worry about it. Then again, the possibility was mentioned to me a decade ago, so I guess it would’ve been years away then. 😂
The only thing that really seems to help are my wrist braces, which I usually try to wear while using the computer for long periods of time. For the longest time, I was sleeping in them and that seemed to help, but I’d stopped because my wrists weren’t hurting anymore. Now I’m back to wearing them again, and I’m even bringing them everywhere with me because I need them almost all the time. It’s not a big deal, per se, but it’s kind of odd—to me, anyway—how quickly this has progressed. I had the numbness for like a year or so and then bam! Tingling and burning.
I’ve been meaning to ask my rheumatologist, but my appointment keeps getting bumped back for one reason or another. I see him this week, though, so we’ll see what he says.
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Aside from weather-related flareups and possible CTS, I’m doing okay. I’ve been super tired lately, so I’m wondering if my B12, D, or iron levels are low again—spoiler alert: they usually are—but even that’s manageable with cat naps, afternoon teas, and my old fallback Emergen-C.
I’m looking forward to the weeks ahead as the weather continues to warm and I’m able to get out and do more. Last week I went to the zoo with Sandy and the kids; a few weeks before that, on a random nice winter day, I walked a mile.
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.
If you’ve been around for any period of time, you know I’m all about goals rather than resolutions. Setting actionable, achievable, and accountable goals is far more productive than making promises.
Usually, I keep my goals for the year down to a short list. Recently I heard about Level 10 Life, which is basically just your life, broken down into 10 areas. You’re supposed to set 10 goals for each area—100 in total—with the objective of eventually fulfilling all areas of your life. I don’t know about you, but I don’t think it’s possible to ever reach 100% fulfillment; there’s no such thing as perfection. Plus, I think 100 goals is a bit overwhelming.
Goals are supposed to be challenging yet within reach. If you set the bar too high, you’ll set yourself up for failure.
A few weeks ago, I found a wheel of life pin that I loved. It focused on eight areas of life rather than 10, with one goal in each area. The objective is to achieve more balance in your life; once you reach a certain goal, you set a new one in that area.
I tried making the wheel of life and failed epically. After several attempts, I realized I didn’t need a Pinterest-worthy craft to help me set goals for 2017. I sat down with my white board and several dry erase markers, and got busy. This list is the result.
My Goals for 2017
Get curtains for all windows. Though it has its quirks, I love our little country apartment, and hope to stay here until we’re ready to start a family. (That’s a whole other blog post, so stay tuned.) To make our place look even more home-y, I’d like to get curtains for each window. Fortunately—in this case, anyway—there aren’t many windows; our apartment was an attic in a former life. I’m starting with the kitchen, with the front door (which naturally has the oddest measurements ever, and I can’t seem to find anything). Challenge accepted!
Get arrow, hummingbird, and spade tattoos. 2013 was the year I got married, and probably one of the best years of my life. But 2014 and 2015 were easily two of the worst years of my life. I lost one of my best friends in 2014 and in 2015, I lost myself. PTSD finally caught up with me and I completely bottomed out. But in 2016, I got better.
There’s a quote that really spoke to me in 2015-2016:
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great.
I don’t know where it originated, but it really resonated with me—especially regarding my PTSD. I truly cannot explain how strong I feel. I’ve got my voice and my magic back, and I feel more me than I’ve ever felt. This is why I want to get an arrow on my ribs, on my right side—to remind me of how I shot forward in 2016. Something simple and delicate (my ribs do swell, after all, so tattooing that area might be a bit… challenging). Something like this, in this same spot:
I think this design is the one I’ll go with.
I’ve long wanted to get twin hummingbirds on my collarbones, for my Popi. He loved watching the birds at the lake, and the “hummers” were his favorites—especially the ruby throated hummingbird. Growing up, I always felt enveloped by magic whenever I could look fast enough to see them. Popi had hawk eyes and saw everything; he was the magic.
I like the general placement of the hummingbirds in the above pin, but I don’t love the design. My plan is to have Jay—the artist who did my hydrangeas and tiger lilies—design and tattoo my hummingbirds. I love his style and I know he’ll help me come up with something I love.
Finally, I want to get a spade in memory of one of my best friends, Sean. He loved spades—I’m pretty sure it was an old nickname, though I have to check with his girlfriend to make 100% sure—and had one tattooed on his forearm. I’ve been racking my brain, trying to figure out the perfect tattoo to remember him by. It suddenly dawned on me the other day that I should get a spade. I’ll probably add it to the sleeve I’m working on, on my left arm.
I’d like to get something for my Biz Noni, too, but for one, I’ll be lucky if I can afford three tattoos in one year. Plus, I kind of already got something for her: my hydrangeas around my Fievel. She was still alive back then, but my dad was talking about transplanting her hydrangeas in the yard. I thought about how amazing it was, that those hydrangeas stubbornly continued to bloom year after year after year—even though she couldn’t physically get outside to nurture them anymore. It reminded me of her; she was “up there” in age, but remembered everything and had survived much. I got the hydrangeas tattooed as a reminder that I can survive, too, even in the toughest of circumstances.
Pay off all debt and past due bills. I won’t bore you with the details, but between my student loan, some credit cards that I opened to help us out, our bills, and my creative team from Booktrope, I’ve racked up a teensy bit of debt. I say “teensy” because I was panicking but when I added it all up, I realized it’s really not that bad. Some people are thousands of dollars in debt; I’m only about $5K in. Still, I’d really like to make it go away—especially the damned student loan that’s been hanging over my head for years.
Long story short, that student loan is from a half semester that I had to withdraw from due to health issues. It was too late to withdraw without penalty, so I got stuck with the bill. I’ve been trying to pay that thing off for almost 10 years now.
My accumulated debt grew to a ginormous monster in my head. I’d wake up in the middle of the night, heart pounding, terrified I’d go to jail for delinquency. That’s totally not the case, but anxiety lies. When I actually broke it down on paper, though, it suddenly became a teeny baby monster. Now that I’m writing for Textbroker and regaining momentum in my career, it doesn’t seem completely impossible to overcome, either.
They say the best way to pay off debt is to make regular payments on everything while going really hard at one particular bill. I haven’t quite decided which one to tackle first, though.
Finish all currently open series. 2016 was all about regaining some lost momentum; 2017 is going to be all about closing boxes.
Right now, I have three unfinished series: the Comes in Threes, Not Just Any Love, and South of Forever series. While the Not Just Any Love series is actually just two companion standalones (Just One More Minute and the forthcoming Char/Amarie novel), the Comes in Threes series has been in limbo for almost four years.
I’ll be releasing the final South of Forever book soon, and then my plan is to get back to Quinn, Tara, and everyone else from Crazy Comes in Threes. I’ll be rewriting CCIT; I won’t be changing anything about the story, but I’ll be making some structural changes—that way I can pull off my master scheme. I’m super excited about what I have in store. More news on that soon!
Go on one date every month. Thanks to the holidays, health issues, and financial stress, Mike and I haven’t been able to spend much time together lately. Our hot dates have recently consisted of doctors’ appointments and him helping me put pants on. So romantic. 🙄 Not!
Money is beyond tight, but I’d really like to do something every month—even if it’s just a movie night in. We’re both always busy, but I make sure we eat dinner together (unless he’s working), with no tech at the table so we’re really focusing on each other. Still, I’d like to do actual dates.
Last month, my Noni got us a gift certificate to our favorite sushi place, so we went to lunch after my rheumatology appointment. (Note to self: blog about that ASAP.) It was nice to get out and spend time together, and we have enough left on the gift certificate to do it again. Little things like that keep our relationship strong.
Host at least one family dinner. Due to my arthritis, it’s really hard for me to pull off gatherings at our place. Not only is it physically difficult, but it also takes a major toll on my energy. The last time we hosted anything was Mike’s birthday party—in October. It was so nice to have both sides of our family all together, but I paid for it dearly in the days after. I always do.
Originally, we really wanted to host weekly Sunday dinners, but that’s just not possible. I’m slowly adjusting to my limitations, which means not pushing myself and accepting things for what they are. Still, I’d like to have at least one Sunday dinner this year; they were a huge part of Mike’s family when he was growing up, and it’s really important to him that the tradition continues.
My plan is to give Plaquenil and Prednisone some more time and, when the weather gets warmer, set a date.
Find a treatment that brings pain down to a 4/10. I’m hoping Plaquenil is The One. I’ve accepted that I’ll probably never have a zero pain level again, but if my new normal could be a 4/10, that would be great. At that level, the pain is tolerable; once it gets to five or even six, it’s debilitating. Honestly, I’ll even take a five at this point; last Sunday, it got all the way down to a five, and I felt amazing. It’s been an eight lately, which is still better than a nine or 10.
But four is about my normal level when I’m not in a flareup. If Plaquenil can decrease the flareups and their severity, I’ll be happy.
I’d also really like a diagnosis more definitive than “it might be Lupus” or “it’s definitely enthesitis-related arthritis.” Right now, my chart has Undifferentiated Connective Tissue Disease (UCTD) as my diagnosis, which translates to “undiagnosed autoimmune disease.” It means there’s definitely something inflammatory and autoimmune going on, but my labs are inconclusive. There are two camps in rheumatology: one that relies more on symptoms to diagnose, and the other that relies more on labs. My rheumatologist falls into the latter, and so did my former rheumatologist. There’s nothing wrong with that, but for my own closure, I’d really like to know the name of the disease that has completely and irrevocably changed my life.
I may never get that. I may have to practice accepting that. Time will tell.
Write “writing through trauma” book as a blog series. I’d like to tell my story—and help others write through theirs. Writing has long been a huge part of my life. I’ve written my way through every major event, be it in a journal or weaving my pain into a novel. The most important writing I’ve ever done, though, were my trauma stories.
I’d like to teach others how to write through their pain. Eventually, I’d even like to lead workshops for local organizations who help sexual assault survivors, but I’ve got to start small. That, for me, means writing a how to book.
I’ve started several times. I keep getting stuck because I’m not sure how much of my personal story I should share; I don’t want to take away from the advice I’m giving, but I’d also like to show how writing through my own trauma helped me. I’ve decided to take my outline and the roughly 10K words I’ve written, and turn it into a blog series that can be later converted into a book. This way, I can get some reader feedback on it while I’m putting it together.
Stay tuned, because that will be starting very soon.
What are your goals for 2017? Let me know in the comments!
And by “bitches,” I mean “dear friends who help me with things.”
This weekend, I finally upgraded my pathetically outdated iPhone 4. Not even the 4S—the 4, you guys. It was years old and turtle slow. It did make calls, which is pretty much the point of a phone, but in my out-in-the-country apartment, I barely have service. Texting is my main method of communication—that and FaceTime. I’ve long been eligible for an upgrade, but money’s been tighter than tight. Sprint.com had a deal: a free iPhone 5S with a two-year contract renewal. Um, hello!
I’d been using Siri on the iPad, which we got secondhand in December 2015—and it radically changed my life. When it’s plugged in, you can use the “Hey Siri” feature, which is pretty handy. For example, if I’m cooking dinner and the iPad is on the counter playing a podcast, I can plunk my sore body down and say, “Hey Siri… Set a timer for 20 minutes.” Hands-free, which my achy fingers and wrists really appreciate. I don’t have to walk across the kitchen to reach the iPad, which my hip and lower back also appreciate.
Since activating my new phone, I’ve used Siri mostly for texting. I’ve been having a hard time with texting lately, because my thumbs and wrists are so stiff and sore. The simplest messages take me forever, and it’s almost guaranteed that I’ll goof them up somehow. It’s really amazing to hit that button and say “Read my texts” or “Text so-and-so…”
While the tech itself is cool and I nerd out a lot about it, I’m all about the accessibility. If Siri has been helpful to me, imagine how helpful it is for others!
I would’ve been completely satisfied with my Siri, but my aunt got us an Echo Dot for Christmas. Now my little gang is complete with Siri and Alexa.
At first, back when Alexa first launched, I thought it was a tad bit creepy that Alexa is always listening. You don’t press any buttons. You just say “Alexa,” and then whatever command. It was also kind of buggy when it first launched; it didn’t understand a lot of things and often played the wrong songs, etc. But Amazon seems to have ironed out some serious kinks. However, Alexa doesn’t seem to understand my husband. Maybe it’s because he spent its first night home completely torturing it: “Alexa, what drugs do you do?” Now Alexa ignores him completely. (I can’t really say I blame it.)
In the morning, I’m supposed to take my Plaquenil, Prednisone, and one of my two Tramadol for the day with some food. I’ve been having trouble with Plaquenil and dairy, though, so if I have any dairy in my breakfast, I wait before taking my meds. Being that I’m so stiff in the morning and my mobility isn’t the greatest until Prednisone kicks in, I’ve already settled into a rhythm with Alexa. When I finish eating, I say “Alexa, set a timer for 20 minutes.” It can hear me from across the room and starts the timer right away. I can even ask it, “Alexa, how much time is left on my timer?” I don’t have to get up or push any buttons. For me, this is a dream. When the timer goes off, I say “Alexa, stop,” and take my meds with water.
I’m sure I’ll find more uses for Alexa and Siri. I’m trying to figure out how I can have Alexa read my manuscripts to me while I’m editing; it can read Kindle books, but I don’t know if I’d have to format my WIP as a .mobi first or if it’d work just fine if I just load it into my account as a .doc. This would help me catch more errors in early passes.
Siri can also take dictation; I’m planning on setting aside some time to play around with writing by dictating to Siri on my Mac. I know a lot of authors love Dragon, but I just don’t have the budget for it. Dictating my novels—if I can get the hang of writing out loud—would really take some strain off my wrists.
I know a lot of people are kind of weirded out by voice-commanded tech. It seems futuristic and slightly creepy. My dad, for example, wants nothing to do with it. I completely agree that there are certain lines you just don’t cross. I wouldn’t load all of my payment and banking information into Apple Wallet, for example. That’s just asking for trouble—or at least, it seems that way to me. But Alexa can order things off Amazon for you, and you can even set a voice code so that it can’t be abused. I don’t often feel well enough to run errands, and Mike is usually exhausted and raring for a nap after work, so it would be pretty handy to say “Alexa, order some paper towels” or whatever when we’re running low. They’d be delivered straight to my door, saving both of us some time.
You can even connect certain home objects to your Alexa. It’d be so rad to say “Alexa, turn down the thermostat” or “Alexa, turn on the bedroom light.” I can easily imagine mornings, when it’s hard to get out of bed, made a bit easier by my girls: “Alexa, read Let’s Get Visible.” I could still be productive.
I do feel kind of weird “bossing” Alexa and Siri around. I can’t help but think of The Matrix and even Dollhouse. It brings up some interesting questions. Does AI have feelings? What makes us human? Sometimes I say “please” or just tell them they rock. I can easily imagine a future where voice-commanded AI is super useful or completely and totally abused—or abusing us! It’s definitely an intriguing avenue to explore in fiction. My Amarie in the f/f companion novel to Just One More Minute always says “please” to Alexa and Siri, because she doesn’t want to hurt their feelings. (Amarie is so sweet, and I can’t wait for you to meet her!)
Security and ethics aside, I welcome our robot overlords. As long as you’re smart about how you use them, they can be extremely beneficial to those of us with limited mobility. I’m even envisioning a future where, instead of the Life Alert lanyard, elderly people have an Echo Dot or something similar in their home; if they fall, they can say “Alexa, call 911” or even “Alexa, call my daughter.”
There are so many fantastic uses for Alexa, Siri, and future iterations. I’m eager to see how this technology progresses!
Do Alexa and Siri creep you out? How would you utilize them in your everyday life? Let me know in the comments!
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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.
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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.
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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.
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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.