sickcyclist

[sickcyclist]

This is the story of my day. It actually starts yesterday, when a heaven-sent rain swept in and cleared the smoke and cooled the air and tamped down the dust on the trails. I went on a bike ride because days like that are a gift. I have exercise-induced hypoxemia, which basically means that my oxygen drops when I exercise for reasons that we still don’t understand. Exercising with oxygen helps, but I still drop into the mid-80s. I knew I was too sick to ride and that doing so would make me much more sick, but I needed it for my mind so I was willing to sacrifice my body.

So that’s the first lesson of being sick. Everyone tells you that you have to be active and it will make things better and all you have to do is just push yourself hard enough. We’ve internalized this message to the point that many people believe sick people could get better if they just PUSHED. But that’s not always true. Sometimes pushing makes you worse. Sometimes it makes you much, much worse. And that can be true even if being active and pushing hard is something you love so much that it feels like it’s core to who you are.

I knew I would have to sleep for 12+ hours to make up for the ride, and I knew that I would have bad oxygen saturation stats because of it. And since I don’t have a real job, it should be easy to just take a lazy day (or week, or month) and get better, right? But actually I do have a real job and that job is to keep myself alive. It’s the job of a lot of us who are chronically ill, and it’s not a profession I would recommend. It’s not fun and it’s not rewarding and no one admires you for it and you’re not asked to speak to 5th graders on career day and you rarely get to move on to a newer, more interesting project.

Here’s what this particular day at work looked like for me. I woke up to a voicemail saying that my pulmonology appointment for Friday had been cancelled. I’ve been waiting to see a pulmonologist since March and was supposed to have an appointment weeks ago, but that was cancelled because the doctor quit two days beforehand. The other doctor in town couldn’t see me until the end of October, so I looked for a doctor in a bigger town hundreds of miles away. She comes highly recommended and in a way I’m happy because I strongly prefer female doctors, but for whatever reason she had to “clear her morning.” My new appointment is five weeks from now. I got off the phone and sobbed, which is not a good thing to do when your lungs don’t work. I probably could have toughed it up and avoided crying if I hadn’t worn myself down so much biking yesterday, but such is life.

I emailed my primary care provider asking for a note saying I could travel with my portable oxygen concentrator. I was supposed to get this letter from my pulmonologist, but now I won’t have a pulmonologist before I travel. The letter has to say that I use oxygen for sleep and activity, but it also has to specify that I won’t use oxygen on the plane. Which is a little funny because airplanes have extremely powerful oxygen-producing systems for emergencies, but they don’t like people who need oxygen because they don’t like the risk that comes with having sick people on board (think emergency landings). So people who need oxygen all the time need their own oxygen concentrator and battery power for the equivalent of 1.5x the time they will be in the air. I’m going on an 8-hour flight and it would cost about $400 to get strong enough batteries for that length. So I need them to let me carry my machine, which has lithium ion batteries that are otherwise prohibited. But in order to carry my machine I need to prove that I won’t be needing it.

I have a great primary care provider. I knew she would write the note. Easy peasy.

My next voicemail was from the specialty pharmacy that my insurance provider uses for certain drugs. I am allergic to a hormone all women produce as part of the menstrual cycle. This allergy is so severe that it has been responsible for 5 miscarriages, and it also means that I’m more miserable than usual for half the month. The good news is that all you have to do to stop it is take out your ovaries, but when you do that you go into full menopause. Which is not desirable because it increases your risk of cancer and osteoporosis and just overall mortality. Like not even from one thing. Just people who go into menopause early die early from all causes and we don’t know why.

That gives you some perspective on what the benefits have to look like in order for the cost-benefit analysis to still auger in favor of ovary removal. But since it is such a serious choice, you have to be sure. And the way you make sure is to stop your ovaries from working with a drug. The drug has hideous short and long term side effects, so if you feel better while taking it, that’s a pretty strong sign that an oophorectomy is the choice for you.

Approval for me to receive this particular drug was in limbo because the provider accidentally entered the wrong diagnosis. I have, as you can imagine, a lot of diagnoses. Entering the wrong diagnosis in this case was particularly funny because I’ve spent the last 6 months fighting with Blue Cross to get an expensive medicine that helps with my allergies. This medicine (Xolair) is approved for chronic urticaria (hives). It is not approved for progesterone hypersensitivity. I have both, which means I itch a lot for two weeks of the month and itch so much that I want to peel my skin off for two weeks of the month. Blue Cross argued that I wanted the drug for progesterone hypersensitivity. No medical provider said that, but it was the diagnosis they could use to deny the drug. Xolair costs $4000 a month. At that price it’s worth it to them to grind people down and hope they give up. It took four appeals and my lawyer (husband) to get the drug approved because I do indeed have chronic urticaria. It’s worked wonders for me, especially being allergic to the sun. You have no idea how easy it is to descend into madness when you are itchy all the time.

I went over all this with my new OB. I explained that, while the allergy shot solved the itching, it didn’t fix any of my systemic problems, which is why I was still interested in removing my ovaries. And because the conversation focused on how this ovary-suppressing drug (Lupron) specifically wasn’t for urticaria, it’s perhaps not surprising that she accidentally listed urticaria as the reason for the prescription. It’s like when you’re afraid you’ll mispronounce someone’s name. You tell yourself, “Say Kee-a, not Ky-a,” so many times that you’re basically guaranteed to call the person Ky-a.

So my ovary medicine was denied, of course, but I contacted my doctor’s office last week explaining the problem and they were very quick to apologize and resubmit. I returned the call from the specialty pharmacy but apparently they had just wanted to let me know that they were sorry for the delay. It was very polite of them but maybe didn’t require a phone call.

Then I got an email from Blue Cross Blue Shield. I logged in to read that coverage had again been denied (no reason stated) and that if I wanted to appeal the decision I would have to appeal through their specialty pharmacy. They gave me the name and number. Of a different specialty pharmacy than the one I had been dealing with for the past month. The one that I had already wrangled account numbers and diagnosis codes and special customer service phone lines out of. I typed up a polite response inquiring why I need to change pharmacies. And then I cried, but only just a little this time.

Then I called Walgreen’s because my medication for muscle spasms had been delayed and I received a note saying the pharmacist needed to speak to me. I am hypermobile so my connective tissue is just a little too bendy. My joints slip in and out all the time and my muscles have to overwork to hold my body together. Frequently they overwork so much that they lock up. This happens much more frequently in the progesterone-dominant phase of my cycle. Physical therapy is the best treatment, but sometimes I need muscles relaxants before I can even start physical therapy.

The man I spoke to at Walgreen’s told me I didn’t have a prescription for that drug. Then he told me I had a prescription but it had expired in March of 2020. I knew that wasn’t true because I hadn’t used it for years but had to start again when I got COVID. So I had no prescription in March of 2020 but I definitely did in March of 2021. No big deal. Just a simple computer error. Totally understandable in a pandemic, and I knew my doctor would refill it anyway. But he apparently felt that it was a big deal and wouldn’t submit the refill to my provider. I have no idea why. Maybe he thought I was engaged in drug-seeking behavior. Or maybe he was having a bad day. But he wouldn’t submit the refill. I hung up the phone and screamed. Loudly. Which really is not a good thing to do when your lungs don’t work.

Murry came up and rubbed the spasm out of my shoulder and listened to me vent and offered to be my medical power of attorney so he could deal with these people for me. But he’s the one with the real job that earns real money and when I’m sick he also cooks and cleans and does the shopping and walks the dogs. I may not be any good at the shitty job I had, but there’s no way I’m going to make him do it.

I switched tactics and chatted with someone through the Walgreen’s app. He was lovely and had no problem submitting my prescription for a refill. Easy peasy.

My final task for the day was calling to find out about the status of my CPAP prescription. I don’t have sleep apnea but while I’m asleep my breathing does slow down significantly enough that my oxygen drops (hypopnea). I need a special CPAP that adjust the pressure to my breathing, but it will get me off of oxygen at night. I’m very excited for it.

My insurance does not require prior authorization for CPAP prescriptions. However, St. Pete’s has its own prior authorization department that I guess makes sure you are not lying about not needing prior authorization? This department is, apparently, understaffed. I called my oxygen “rep” to find out how it was going. She very kindly bypassed the prior authorization department and called Blue Cross directly. Blue Cross informed her, as had I, that a prior authorization was not necessary. She could officially get me a CPAP.

Except that there is a national CPAP shortage. So she will try her best to get me one as soon as they get more. Hopefully this month. Even the rare, wonderful people who try to help you are sometimes as helpless as you.

I didn’t cry this time. Crying doesn’t fix anything and I can’t risk losing more oxygen. So I turned to writing therapy instead.

This was a bad day at work, but there are rarely good ones. It sucks to be sick, but I’m smart, articulate, overly educated, wealthy, and white. It could suck so, so much more. Someday I’ll turn all of this knowledge that I never wanted into something that helps people other than myself. Until then maybe someone will read this and know they are not alone. If being sick is your job, I see you. I would give you a hug—or a bonus!—if I could.

[sickcyclist]

Perspective is a funny thing. I’m as worried about coronavirus as anyone else, but for me quarantine represents much less of a lifestyle shift. I already have to mostly work from home, which is a hard pill to swallow when your passion is teaching. I’ve given myself debate coaching so I can have just a little bit of real interaction with students, but it means that I’m very sick for most of the fall and winter. I already can’t socialize when my friends or their kiddos have sniffles. I have to call in to meetings and cancel appointments all the time. I’m lucky enough to travel, but I have to plan on being sick for days or even weeks after when I do.

I also think COVID-19 is a bit less scary to me (but also more scary than healthy people probably think) because the symptoms sound a lot like my autoimmune symptoms. Extreme fatigue and headaches and muscle pain and chest pain are all norms for me. And I have learned that I can do a lot even when I’m in an incredible amount of pain. COVID-19 should be scarier because you die, but people die from lupus all the time. I’ve probably thought about death more than a normal 38-year-old.

Autoimmunity hasn’t killed me yet and I don’t intend to let it, but it’s interesting to see how people are responding to what is often my norm. It’s hard to be in pain all the time, especially when you look “normal” and people have no point of reference for what you’re going through (sidenote: if you see a “normal” person parking in a handicap spot or shopping during hours reserved for the vulnerable, don’t rush to judgement). Pain is hard. But isolation can be much, much harder.

Here’s THE UPSIDE—I think I have some tips for your new life in the bubble.

1. Shower.

2. Change out of your pajamas and into “work” clothes (even if those clothes are yoga pants).

3. Make your bed.

4. Shower. Take the time to shave or style your hair even if no one but you will see it.

5. Have scheduled breaks similar to those that you would have taken at your real job.

6. If possible, separate out a specific work space that you only use for work, no other home activities.

7. Have a text chain with friends/family/colleagues to fill the social void from not being at the office.

8. Shower. By the time you figure out that I was right about this one, it will be too late.

9. Don’t be ashamed to let Grey’s Anatomy reruns “talk” to you in the background as you work. These are your new coworkers. The key is to find something with familiar voices that you can also tune out.

10. Try not to go a single day without physical activity. The reason you make the bed is so that you’re not tempted to spend time in it during the day, even when you’re feeling a little sad or sick.

11. Try not to go a single day without leaving the house. Hike, walk the dog, sit on your porch and read a book for ten minutes. It is surprisingly easy to get lost in loneliness when you stay indoors. Remind yourself of the big wonderful world that will be waiting for us when all this is over.

12. You already know what 12 is. The last thing you need is some weird skin infection because you haven’t been following my advice to SHOWER.

P.S. I have no tips for those kids you have to deal with all the time now. I think the best you can do is thank the universe for teachers and public schools and maybe send a gift card to that stay-at-home parent you used to think had it easy.

[sickcyclist]

When people ask my what I “do” I talk about my contract work or my volunteer work or my Etsy shop. I never say that there are some days when my only “job” is keeping myself alive. I’m posting this rant because a) it’s therapeutic and b) it shows just how easily the fucked-up medical system can compound the problems of the sick.

Today I woke up with blinding chest pain. This isn’t a new problem—according to my former rheumatologist it’s probably the beginning stages of my autoimmune disease attacking my lungs—but my meds have been working really well to keep it at bay. I’ve been unusually sick for about a week, but I’m sick so often that I generally try to solve the problem myself before going to the doctor. Luckily I have great doctors who work with me to plan in advance for the various common ways that my disease flares. For whatever reason this illness isn’t responding to any of the normal strategies.

I knew there was no way I would get into my GP, today, so I called her nurse practitioner. Turns out they are both out of town for a conference. Kind of a bummer that there’s no backup for the backup person. Urgent care isn’t really set up to deal with my type of illness, so I scheduled an appointment for Monday with the plan to go to the ER this weekend if necessary.

What I really need is to see a rheumatologist, but mine left in July and I don’t get to establish with a new one until January. And I can’t schedule a sick visit until after I’ve had my intake appointment.

So the plan for today became pain pills and rest. But then I realized I’ve been so sick this week that I almost fell behind on filling my prescriptions. I take 5 medications daily and 8 that I use as different problems flare. I credit these meds for saving my life (see above comment about lupus attacking my lungs), so I DO NOT skip doses.

After I submitted the refills I got a notice that my insurance said one was too soon for refill. Upon investigation, I found that my last prescription was wrong. I’ve been on the same dose for years, but this time it was entered as 1 pill per day instead of 2. I know my doctor would fix this in an instant, but if course, she is out of town until Monday. As is her backup.

This med has big time withdrawal problems, so I contacted my pharmacy asking for SIX pills to get me through the weekend. I spent a hour chatting with various representatives on the web and on the phone. I pointed to my rx history and reiterated that I only wanted six pills and would straighten out the rest on Monday. I asked them to look up the information on sudden withdrawal for this drug.

Three people told me no. Finally, a very exasperated pharmacist said I could have the pills for $14. Apparently he was saying no not because it was out of his power to give me the pills, but rather because he thought I wanted them for free. I almost cried at the absurdity.

I have amazing insurance and the best doctors in Helena. I’m educated and organized. I literally get paid to teach people how to be persuasive. I know how to advocate for myself. My husband makes enough money that I don’t have to work (I WANT to, but I don’t have to). We can pay for therapies not covered by insurance and things like grocery delivery and housekeeping so that I don’t feel like a total burden. When I do start to feel better, I won’t have to play catch up. I’ll get to jump right back into running and hiking and traveling and hanging out with my loved ones and doing as much “real work” as I can. I think I might be luckiest sick person on the planet.

But today in turn wore me down, made me want to scream, and made me feel almost paralyzed by my powerlessness.

I desperately want to create something that would help. I dream of a company of care coordinators for those with chronic illness (cancer patients sometimes get this—the chronically ill have less access). We’ll plow through days like this so that the sick person can just try to heal. We’ll only hire sick people because they know better than most how to chip away at the system and, more importantly, they have developed a deep sense of empathy that’s hard to achieve if you haven’t lived with pain (with the exception of close loved ones of sick people—I know you see it). We’ll figure out some creative employment model so that people can work from home with flexible hours when they’re well and keep health insurance (and dignity) when they’re not. We’ll only make as much money as we need to help as many people—employees and clients—as possible. We’ll take care of each other when we’re down and lift each other higher when we’re up.

I know I could make this dream come true if I tried. I just don’t know when I’ll have enough good days to try.

[sickcyclist]

I’m trying to figure out strategies to enjoy the Montana summer without going into a flare, and this upf 50 lightweight bamboo hoodie from Free Fly Apparel has become my very favorite piece of clothing. Yesterday was super sunny and in the high 70s, which would normally keep me confined to the indoors. But I’m training for a half marathon and long distances on the treadmill are boring.

This hoodie is magical. It keeps me covered without worrying about reapplying sunscreen, and it is SO cool and comfy. I don’t even mind that I look like a very pale Unabomber in it! Now to find the perfect pair of upf leggings...

[sickcyclist]

An autoimmune response in diseases like SLE, Rheumatic fever, Hashimoto’s Thyroiditis and many more

[sickcyclist]

Almost always the second one.

[sickcyclist]

Yesterday’s bike ride gave me opportunity to reflect on my progress since my diagnosis. I—like everyone who experiences it—hate lupus. I struggle to achieve old benchmarks of normalcy. The thing that I work the hardest not to give up is my love for the natural world, for stretching my legs and exploring, for breathing the outdoor air. But sun and heat and just being, in a way that few can understand, EXHAUSTED get in the way of me fully enjoying my amazing Montana cabin life to the fullest.

But yesterday gave me an opportunity to appreciate how far I’ve come. Last year at this time I had just started Plaquenil. When you start Plaquenil you only experience nausea. Nausea and pain and fatigue and overheating and pain and night sweats and itching and pain and whatever else an overactive immune system does to your body. You have to take it on faith that Plaquenil will build up in your system and that the nausea will abate and that your photosensitivity—a major trigger of your symptoms—will eventually, at least somewhat, abate.

There is no immediate payoff, and this is appropriate. Because no matter how much better modern medicine can make you feel, you will never be “cured.” You will never go into “remission,” because that implies that at some point you can stop treatment. You can’t. There is no cure, and the best you can hope to achieve is disease quiescence. There is no quick payoff for Plaquenil or immunosuppressants or even steroids, but in the end that’s ok. Because if you want to be well, you need Western medicine, but you can’t rely on it alone.

So yesterday I did what I haven’t done in at least a decade: I rode my bike in 75 degree heat, grinding as hard as I could, for 45 minutes and a steep-but-fun 3 miles—and I didn’t make myself sick.

Now mind you, I’ve gone on much steeper bike rides for much longer distances and times, in MUCH hotter weather. But that was before I understood my diagnosis and became aware that pushing through was making me more sick.

Last year, my first year of treatment after probably two decades of undiagnosed autoimmune problems, was the first year I listened to my body (and to my doctors!). If it felt like exercise was increasing my inflammation, I stopped. If it felt like the sun was starting to trigger a flare, I stopped. Most days, this meant I got to do a mile of walking on the treadmill, indoors.

It felt like my favorite part of my life had been stolen from me. Comparatively, overdoing it and risking sending myself to the ER felt like the more desirable choice. At least then I could experience the beauty my landscape has to offer, at least for a tiny bit. But I stuck with the program, no matter how painfully slow.

Six month ago I added Imuran to my treatment regimen. Cue the same nausea, the same desperate faith that somehow a drug that makes you feel terrible will eventually make you feel better. And also you will catch every single cold and sniffle that you are exposed to. Only when you catch it it will feel like the worst flu you have ever had.

Fast forward to yesterday. Yesterday was actually not a great day in terms of pain or energy. But I forced myself to shut down work early (I’m INSANELY lucky that I can—rest is, unfortunately, a major privilege), take a nap, and try to make the evening better than the morning. I met my husband at the trailhead and proceeded to tackle the climb to my second-favorite trail in our valley. And, did I mention, it was 75 degrees and sunny out?

And, at least yesterday, I killed it. It was my best time and the most fun I’ve ever had on that trail. I got to push myself to my limit in warm (for me!), sunny weather, and I didn’t go into a flare. Maybe next time 75 degrees and sunny will be too hot and sunny for me, but this time it was bliss. And it was at least, way better than I could have done at this time last year.

I think that’s all you can expect from lupus. You get minor victories and major stumbling blocks. If I don’t choose to focus on the long term and to emphasize the victories, I’m not sure how I’ll find the strength to keep going. But today, at least, I’m feeling very happy, and very, very strong.

#lupus #lupuswarrior #chronicillness #autoimmunedisease #noremission #exercise #mountainbiking #photosensitivity #plaquenil #imuran #immunosuppressants