One of my greatest fears is falling. It’s not the height that scares me. It’s the fast lack of grip, the surge to the bottom. I don’t like being out of control.
Ironically, a recurring theme in my life is losing control. I never learn to let go and enjoy the fall, see where it takes me.
For the past four months, I’ve been fighting to keep my health insurance plan. My state changed the minimum annual income requirement back in March, and we’re now $400 over the mark. $400 is far from enough to cover the cost of a yearly deductible and monthly premium, plus co-pays and prescriptions. Yet in the state’s eyes, we should be able to afford it no problem. They don’t account for rent and heat. They don’t even look at your income after taxes.
We looked at my husband’s company’s insurance plan, too. Even though it’s a bit cheaper than one of the state market’s plans, we still can’t afford it.
We’re already struggling.
I’m really grateful that we had state insurance these past few years. Because of it, I was able to get a diagnosis and start treatment for my UCTD. Still, we can’t afford another plan, and we definitely can’t afford my treatment and monitoring without insurance.
I looked into several avenues, but they all came down to one thing: soon I’d be out of medicine.
Once I run out of medicine, my disease becomes aggressive. It isn’t long before I’m bedridden again and I’m unable to care for myself. To write. To live.
I felt myself spinning out of control. One of my other greatest fears is my disease. I’ve worked hard to get to where I am. I’ll be damned if I go back.
The fear is suffocating. My rheumatologist and I have determined that Plaquenil isn’t enough, that I need to add other medicines. Plaquenil has been so very therapeutic for me, but it’s not a magic bullet. I still have pain and stiffness, fatigue and brain fog, and other symptoms that may be related but definitely need further testing.
It doesn’t help that someone I love with an even more severe condition is losing her insurance, too. Chronically ill people rely on social services, but those programs are always the first to go when states need to make budget cuts.
I’m too scared to feel angry.
I have one last thing I can try. It’s a long shot, and I’m only going to have a small window. If I’m successful, it’ll be the net that catches me at the bottom. If I fail, well… I guess I’ll have to finally learn to let go.
Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.
I’m feeling it.
My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.
It feels like I can’t win.
This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.
Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?
I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)
My appointment is almost two weeks away, though, so I’m gonna have to call.
It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.
It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.
On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.
And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)
There’s a metaphor in here about patience and faith. I think.
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!
All of my persistence paid off—I got my shot today. However, after this afternoon’s visit, I’m even more confused and concerned about my illness.
Excuse me for a minute while I haul out my giant binder with all my medical records…
Last summer when my rheumatologist diagnosed me with Reactive Arthritis (ReA), she mentioned that it could still be Rheumatoid Arthritis (RA). Because I’m seronegative, though—meaning my rheumatoid factor, sed rate, double stranded DNA, and HLA-B27 blood work is always either borderline or in the normal range—she decided to treat me as if I have ReA.
Side note: I need to start tracking my blood work levels; even though they’re always in the normal or borderline range, I need to chart them to see if they’re increasing at all—even if in small amounts.
This afternoon, while my rheumatologist prepped me for my cortisone injection, she said she felt bone spurs in both the small joint of my big toe, as well as in the large joint (that giant joint right under your big toe). I’ve been having trouble with both of these joints, so it makes sense.
While I was chasing doctors trying to get my right hip taken care of, scan results showed bone spurs in that joint, too. At the time, I was seeing an orthopedic. There was talk of surgery, and then all of a sudden I was told I wasn’t a candidate.
Nothing was ever resolved. I simply got used to the severe pain. And I got myself a cane.
Around the same time, x-rays showed a sclerotic lesion, AKA “bone island,” on my left ankle. I had a bone scan done to make sure it wasn’t anything cancerous and everything came back normal. According to the Department of Radiology at the University of Washington, “bone reacts to its environment in two ways — either by removing some of itself or by creating more of itself.” Sclerotic lesions occur when whatever is happening to the bone in question is occurring over a long period of time (as opposed to rapidly). “If the process is slower growing, then the bone may have time to mount an offense and try to form a sclerotic area around the offender.”
What might be eating away at my ankle and causing my bones to armor up? I can safely rule out cancer and injury to my ankle. UW’s radiology article lists several causes, two of which are autoimmune and inflammatory diseases.
The puzzle is starting to come together.
All of the signs are pointing toward something degenerative. My rheumatologist mentioned something about osteoarthritis (OA) while she all but ran out of the exam room. (She’s leaving the practice at the end of this month, so at this point she’s just done.) I asked how that was possible, since I’m 27 and definitely not a runner. She basically brushed me off and suggested that I might have OA as well as ReA. I don’t think this is the case.
My gut has been telling me over the last decade that my arthritis is degenerative (like RA). One of my biggest concerns has been my joints deteriorating as my autoimmune disease progresses. I’ve been questioning whether I actually have ReA since last year, but even more so as I chatted with other ReA patients in a Facebook group. My symptoms are similar to theirs, but there are a lot of inconsistencies.
For one, most of the ReA patients could connect the onset of their arthritis with or right after an infection of some sort. I had mono before I got sick, but that was a whole year prior. There’s very little research on mono and ReA, but most articles cite strep, bacterial intestinal infections, and STDs as causes of ReA. Not mono.
Since I just got the cortisone injection in my toe today and I’ll be transitioning to a new rheumatologist at the practice, there isn’t too much I can do about this puzzle right now. My rheumatologist insisted that if the toe doesn’t get better, to follow up with a podiatrist in the meantime. I don’t love the idea, but my best friend made a great point: a podiatrist specializes in all of the tiny bones of the foot. If I end up needing surgery, he will be the one to do it. He’ll also be able to give me fast relief. While it’s true that a podiatrist can’t treat all of my other aching joints, I can’t screw around when it comes to my feet.
I need that specialist—especially if this is RA and it continues to progress.
She’s right, of course. I’m just frustrated, and tired of seeing nineteen doctors every time another joint goes. I guess I just thought I was done playing the doctor hop game; I thought once I had a diagnosis, I’d just have to do regular followups and keep taking my SSZ like a good girl.
But of course it’s not that simple.
My rheumatologist said the shot could take a couple of weeks to work, and to go easy on my toe. No flip flops—or at least, not cheap ones that lack support. I’m to wear sneakers and take it easy.
It’s been a busy last few weeks while I’ve been trying to get things rolling again. On top of editing, writing, and marketing, I’ve also been having trouble with my arthritis.
My joint pain is migratory, which means that it can affect any and every joint, often at different times. Sometimes it decides it’s comfy and moves into a particular joint for the long haul. For the last couple of years, I’ve had a lot of trouble with my right hip. Nothing was ever really done about it, despite the many specialists I saw for it—including my rheumatologist. I basically went ’round and ’round the medical merry-go-round—which is nothing new.
Throughout the last decade, this has been my experience over and over again.
So when I started having trouble with my big toe on my right foot, of course I totally, naively thought things would be different this time. After all, my rheumatologist diagnosed me with reactive arthritis last year and started me on treatment. I’ve been taking 1,500mg of Sulfasalazine every day for several months, but it really hasn’t made much of a difference. Lately, my joint pain has changed from a deep ache to an almost bruised feeling on top of the ache.
When I went to my rheumatologist for a followup, I let her know about all of this. Since she’s leaving the practice this summer and her spot is being filled by another rheumatologist, I figured we’d probably come up with a transition plan. I asked her about trying something else, and she said she wanted to continue the SSZ. Since there were periods of time when I’d stopped taking it for one reason or another—insurance lapse, hospitalization, total brain fog—I was willing to give it another shot.
She didn’t seem too concerned about my toe, though, and sent me on my way. No transition plan. No mention of trying another DMARD.
Doctors are overbooked. I know this. It’s usually prudent to stick to just one issue during office visits, otherwise things get lost in the midst. So I called the office and spoke with her medical assistant, reminding her about my toe.
I can barely bend it, and definitely can’t put weight on it. It feels just like my hip did for all that time. The thing is, my hip didn’t just magically stop hurting. It’s still there. The pain in my toe makes my hip look like a walk in the park—which I’d never imagined could feel any worse.
This is how it goes. I get used to one particular pain level, only to have my body say “Challenge accepted,” and throw something else at me.
My rheumatologist’s solution was Aspercreme with lidocaine.
Instead of facepalming and arguing, I replied that I’d give it a shot. Her assistant told me to call back if it didn’t work.
Here’s the thing: I have an entire box full of things I’ve tried that didn’t work, or worked a little but then stopped. I’ve got lidocaine patches somewhere in my house that I tried on my hip. I have half empty tubes of Voltaren. Tiger Balm does help quite a bit, but if I reapply too often, it loses its effect.
My rheumatologist is very by the book, with a light touch as far as treatment goes. I really appreciate the fact that she doesn’t send me off loaded up with prescriptions. I once had a primary who did just that, and it almost killed me because their office didn’t pay attention to interactions and I blindly trusted them. But it’s starting to get really frustrating that, with every new achy joint, I have to start from square one with her.
It never goes this way:
“Ah, yes, another trouble joint. Well, we’ve tried X, Y, and Z in the past, so let’s not even bother with that. Let’s move up to Plan B and not waste any time.”
I understand why she does it. But I almost wish she was a bad-ass like the attending in the ER who smashed the inflammation in my body with a super dose of Prednisone and a shot of dilaudid to tide me over while the steroids got going.
Instead, I had to play the game. Every chronic pain patient is familiar with this game. I already knew Aspercreme, Icy Hot, etc don’t do much of anything for me. But I still had to do things her way. I called back and let the office know that it didn’t work, and my rheumatologist personally spoke with me and told me that she wanted to try a week of Mobic (an NSAID). If the Mobic didn’t do it, she told me, she’d have me come in for a cortisone shot.
Thankfully, this was a prescription so my insurance covered it. Still, I’d already tried Mobic in the past, several times. It doesn’t work. But again, I did things her way because she’d told me she’d give me the cortisone shot; I knew ahead lay some kind of relief, even if I had to spend another week alternating between icing my toe and wanting to just rip the damn thing off my foot.
I did the Mobic for the week and, as expected, it didn’t help.
When I called the office, I was told that they would speak with my rheumatologist and find out when she wanted me to come in. Because I was still in editing land and doing a whole bunch of other marketing/administrative things (and I don’t get a signal for my phone inside my house, sigh), I missed the callback. I didn’t get to listen to the voicemail until Saturday morning. It was not good news.
In the voicemail, my rheumatologist’s assistant told me that she wants me to see a podiatrist and that I have to set up the referral myself. There was no mention of my cortisone shot.
I cried for a good solid thirty minutes, and then on and off throughout the rest of the day.
I know that steroids are controversial in the chronic illness community (for both patients and doctors), so I really don’t want to hear “That’s what you get.” My issue is, I was told I would get one. I was promised relief. Instead, I was passed off to yet another specialist. This has been the pattern for the last nine years.
I’m tired of this. I’m tired of feeling like my doctors either don’t believe me or don’t know what to do with me. I get that my rheumatologist is leaving the practice and probably just doesn’t have the time to squeeze me into her schedule before she goes. I get that. I really do. I’m crazy busy, too. But what I don’t get is why I had to go through all of this—the office visit, the phone calls, the Aspercreme, the Mobic—when I was only going to be handed off anyway.
I’m sorry, but I won’t be seeing a podiatrist.
I have autoimmune arthritis. Next month it’ll be my elbow or my hip again. I shouldn’t have to see a different specialist for each body part, going through the entire thing all over again: the consult, the battery of tests, the waiting, and then maybe some treatment. Emotionally, I can’t continue coping with the strain of this pattern. It’s exhausting. Physically, I can’t wait an entire summer before I get this taken care of.
Summer is supposed to be for getting outdoors, doing what little physical activity I can. It’s not supposed to be like winter, where I sit on my couch with my pain meds and heating pad, missing out on family functions.
I’ve been doing this for almost ten years; I’ve been doing everything their way. Only when I push back—insist on treatment—do I ever get anywhere.
So, this afternoon, I called my rheumatologist’s office again. I got the front desk’s answering machine (it’s Monday, so they must be crazy busy after the weekend), and left a message asking for clarification and repeating that I’d been told that I would be able to come in to the office for a cortisone shot.
And I’ll call again tomorrow.
And the next day.
Every day, if I have to.
I’m putting my foot down (but with all of my weight on my ankle, off my toe, of course).
I think I’ve patiently played the game long enough.