Waves of relief

March 3, 2021

Waiting for the biopsy results was the longest two weeks I’d ever experienced. Why did the pathology lab have to be backed up now, of all times? I was terrified. If it was breast cancer, I wasn’t sure if I could handle it. This might just be the thing that broke me. The thing that was one thing too many. Who even knew that breast cancer could present as a skin irritation? I thought I was seeing the dermatologist for something weird, but benign, and now I was suddenly waiting for biopsy results. Would would I do if it was cancer?

That was more than a dozen years ago. The results came back negative, and I was relieved, and went on with my life. Until two weeks ago. Two weeks ago, I happened to see something weird in my peripheral vision as I passed the bathroom mirror. I looked closer. I had something weird on the side of my breast. It looked like maybe a pimple that had gotten irritated and popped, then scabbed over. Weird. I know pimples on breasts are possible, but I don’t usually get them there. I moved on.

The next day I took another look. The scab looked green-ish and the red area around it had grown larger and darker. Uh oh. I thought of that other time, more than a dozen years ago. It was after hours, but the next morning I called my nurse practitioner’s office and set up a telehealth appointment. My NP is a women’s health specialist, and really knows what she’s doing. I waited anxiously for the next day’s appointment. Then it occurred to me to send in photos. As soon as she saw the photos, the NP told me to come in, and mentioned that we might need to schedule a mammogram. Now it was Saturday, and they were about to finish seeing patients for the day. They didn’t see patients on Sundays and the scheduler wouldn’t be in until Monday. I waited. And waited.

Finally it was Monday, and I reached out first thing to get an appointment. The soonest was Wednesday, but I asked the scheduler to call me if there were any cancellations. I was a nervous wreck. For the first two days I had told myself that I was overreacting by even considering the possibility that this was anything other than benign, but when my NP mentioned a potential mammogram, I knew it wasn’t all in my head. Like I had all those years ago, I wondered if I could handle cancer. I wondered if it would be the thing that broke me. But this time, I was pretty sure it wouldn’t be. I would deal with it, somehow.

I was fairly sure that even if this wasn’t cancerous, it was probably infected. The center scab had come off, then scabbed again, then come off again, even though I was careful not to touch it. Each time the scab came off, it oozed. The center was yellow/green and the surrounding area was red. This was not good, whatever it was. But I had to wait.

The timing was odd. I had my first period in at least a year. I was taking antibiotics for SIBO, a gut issue. Those antibiotics target the gut, though, and wouldn’t help this. I hadn’t been indoors anyplace in 5 months. But if ever there was a time to go indoors despite the pandemic, this was it. This all ran through my head for days. Then on Tuesday, as I sat at my kitchen table sewing masks, the phone rang. There was a cancellation at 1pm. I looked at the clock: 12:21pm. I live 35 minutes away. I took it without hesitation. I shut off the sewing machine, threw my things in a bag, and ran out the door. I ate my lunch in the car with my hands, thankful that I had leftovers available. A cold hamburger patty, cold roasted potatoes, and cold salad never tasted so good.

Even while highly on edge about the thing on my breast, I noticed and was grateful for the office’s excellent Covid protocols. The assistant took my vitals. Then I sat in the room while my NP called me on my cell phone (which I’d been instructed to bring for this purpose) and asked me to explain the situation. This minimized our time together in the room. She came in and washed her hands carefully while clearly trying to distract me with neutral conversation. Then she came over to examine me. It was my first physical contact with a human in months, but I didn’t even notice that part. The only thing I processed was her response: she was relieved. It wasn’t cancer.

I left that office with a prescription for antibiotic ointment and with the confidence that that open sore was not indicative of breast cancer. Then I celebrated. The day before I’d baked cookies, which I ate as comfort food because I was stressed out. Now I ate them to celebrate. I blew off all responsibilities and spent the afternoon playing computer games, taking walks, and relaxing. I happened to see a neighbor’s adorable puppy on one walk, and had a lot of fun playing with him. What a joy!

The next day, I woke up and remembered it all immediately. Again, I felt relieved. Again, I had a relaxing day with few responsibilities. It was just what I needed after such a harrowing week.

Of course, responsibilities can’t be held at bay forever, and I am back to doing the things that must be done. Still, I am hugely relieved. As I put the antibiotic ointment on my breast three times a day and notice that the scab has not reopened and the redness has continued to shrink and fade, I feel the relief all over again. This could have been so much worse. So many times, my body has defied the odds and given me some new terrible condition, but not this time. So this time, I’m celebrating.


Struggling with enough

January 22, 2021

This is far from a new topic, for me or for anyone with disabling chronic illnesses. Still, after so many years, I would like to say that I have finally figured out how to do less. I would like to say that, but I would be lying. But hey, at least I’m making progress, and that’s the important part, right?

I feel like a very productive, active, adventurous, exciting person trapped in a body that can’t do all of those things that I want to do. Granted, even folks without chronic illnesses often can’t do all of the things that they want to do. Just because you don’t have a disabling chronic illness doesn’t mean you have the time, money, or capacity to everything you want to do. Still, being disabled makes certain things impossible.

Let’s ignore for a minute the bigger things that I want to do but can’t: skydiving, backpacking around the world, eating new foods in different countries, going on road trips, reading all of the books that interest me (ok, this would be impossible no matter how healthy I was), exercising regularly and getting strong, owning a dog. Let’s focus on the simple day-to-day tasks like cooking meals, doing laundry, writing, knitting, and working on personal projects. Even with only these, I get overwhelmed.

Every day I write out what I want to do, and every day the list is too long. I can never complete it. I have been making a huge effort to cut that list down and so far it seems to be working. Many times there are only 3 or 5 incomplete tasks instead of the 12 or more that remained several weeks ago. But that’s still too much. I need to be able to finish everything and have time to relax without feeling like I should be doing something more. The problem is simply that I want to do it all! I look at the list and think, that’s too much, I should remove something. But there’s nothing on there that isn’t entirely necessary and that I want to remove, so I keep it all. Then I don’t finish it and I feel stressed out. If I could just make myself attempt less, I would get the same amount down, but probably with less stress, right?

I recently wrote my first book and I want to write another one. I want to help friends with their projects. I want to clean out my closets. I want to spend more time on my volunteer work without feeling rushed or overwhelmed every time. I want to go on more dates (via Zoom these days). I want to have more social time with friends (also via Zoom these days). I want to spend more time reading. I want to do so many things, but there are only so many hours in a day, and of those, there are only a certain number of hours that I’m able to do things.

On a good day I might be able to do things from 10am-5:30pm. That’s a long time. But somewhere in there I need to get dressed. I might need to shower. Meals need to be cooked, dishes need to be washed, laundry needs to be done, cleaning needs to happen. I need to take walks and do my physical therapy. I need to eat. There’s a lot of rest time built into those hours, too; I definitely can’t be engaged the entire time. Some of that time can be used for active activities but some of it must be sitting and working at my computer on a less physical project. At various times I will be answering emails and text messages, too. What most people do in 16 hours must get squashed into those 7.5 hours, and that’s on a good day. On a less good day I have fewer hours, and on a bad day I hardly have any hours at all. Plus, each thing simply takes longer than it used to. Cooking a meal that used to take me 45 minutes now takes me an hour and a half. Getting dressed takes longer. Answering each email takes longer. Between my brain working more slowly and my body’s decreased abilities, many things have slowed down. That means that not only do I have fewer hours, but I can do less in those hours. But I’m guessing this is familiar to you.

The thing is, I still want to do so much! My ambitions and desires are still there, even if my abilities have diminished. I look at my list of goals for the year and it feels so doable, but then I want to work on everything at once and that’s not doable at all. I look around my apartment and want to do ALL THE THINGS. I want to clean the shower, knit a few more rows of that blanket, put together that shelf thing for my shower that’s been sitting in the corner, watch that dvd sitting next to the tv…. A hobby here, a task there, a new project, an old favorite – somehow there’s simultaneously too much and not enough.

The only solution, of course, is to adjust my expectations. I know this, I know it very well, but I still struggle. My plan was to finish this piece with a list of the steps I would take to improve the situation. Or maybe I would discuss a new mindset. The truth, though, is that I have known the answer all along, and I bet you have, too: I can not do it all, and must stop trying to do it all. At least, for now. I must focus on what I can do, and try to be content with that. And who knows? Maybe I will still be able to do some of those other things down the road? After all, if you only write one page each day you will, at the end of a year, have written a book. So if I only write a few sentences, knit a few rows, clean one countertop, sooner or later, in theory, I should be able to do at least some of what I want to do. It’s not enough, but it will have to be enough for now.


Burned out and needing to reprioritize

November 16, 2020

I noticed it after the election, though in hindsight it started long before. I tried to ignore it, but I should have known that was a mistake. Still, it gave me the wake-up call I’ve been needing.

For a while I was feeling better than I had in ages. The crisp fall air was delightful, and with the cooler air I had less inflammation. I enjoyed better sleep with the fresh autumn air coming through my open bedroom windows. I was taking 2 walks every day, and one of them was longer than my previous once-a-day walks had been. I was doing pretty well, and thought it would continue at least through the fall and winter.

Then on that beautiful Saturday, we got the election results. It was like I had been holding my breath for months, and I could finally exhale. What a relief! I was having a socially distanced visit with a friend, our first time seeing each other since this had all begun. We had met up in a suburb between where we each live, and had taken a walk. We got the news after the walk, as we stood across the street from each other, chatting. First there was stunned disbelief, then jumping up and down (her), texting everyone I could think of (me) and dancing in the street, literally (both of us.) I was excited all day long.

But here’s the thing about adrenal fatigue: any type of stress on the body can’t be handled. Bad stress causes problems, but good stress also causes problems. I explain it like this: winning the lottery would probably have the same physical impact as the death of a loved one.

So, after many months of the pandemic, a lot of isolation (I live alone and have no one I can be in a bubble with, so I haven’t had any non-medical human contact, even a hug, in 8 months), fear over the election, and then election-related celebration, my body couldn’t take any more. The good thing is that I didn’t have the kind of fatigue “crash” that I have had in the past. Maybe the medication is helping or maybe it was something else, but I’m grateful for that. Still, I felt it, but I pushed myself anyway to keep doing things. I did stuff around my home. I brought my car in for work. Each day, I felt it coming on more and more. Then on Wednesday I had a sore throat and a slight cough. Uh oh.

I’ll interrupt myself here to say that I know fatigue, sore throat, and cough are Covid-19 symptoms, but I was 99.9% sure it wasn’t Covid-19. These are the exact symptoms I get whenever I have adrenal fatigue issues. The cough wasn’t regular – it was one cough every hour or two, a small one, and it had nothing to do with chest congestion. The sore throat has more to do, I think, with my thyroid getting inflamed. So while Covid crossed my mind, it was hours after I’d already assumed this was my usual adrenal stuff. These are the warning signs, the “I better rest NOW or else I’ll get really sick” signs. That’s what I was paying attention to.

So by Thursday I knew I had to rest, and I did. I felt sort of gross and forced myself to shower, which took far more energy than I’d have liked. Aside from that, I rested all day. I ate leftovers. I watched lots of YouTube knitting videos. I crocheted and knit, read a book, watched tv, barely left the couch. It was just what I needed.

On Friday I was still a bit tired, so I spent another day watching YouTube videos, this time about decluttering (something I have been working on.) I felt inspired, so I put away a few things, and made notes about other things I would do when I had more energy. That little bit of activity felt good, so I figured I would be ok the next day. Usually I only need to rest for a couple of days if I listen to the warning signs. (If I ignore the warning signs, I end up sick for about a week and a half, so it’s worth paying attention.)

But then Saturday rolled around. I was still a bit fatigued. No problem, I could put off the world for another day. I watched fewer videos, but still rested. I thought about taking a walk. After several days of rain the sun was out, but the idea of expending that much energy was too much, so I stayed in. Watching videos and reading a book felt like such a luxurious treat! I cleaned up around my apartment a bit, finally clearing the crap off my coffee table for the first time in ages and putting away the clutter that had accumulated in a corner of my living room. This felt good.

Then it was Sunday, and I knew I was ok and should go back to “normal.” The thing is, I didn’t want to do normal. Normal for me felt like a job. And for the first time, I realized that normal had become a job! I was spending so much time on volunteer work and some small bits of paid work, and feeling the rest of the time like I needed to check off items on my personal to-do list, that I wasn’t taking time to relax. Watching a knitting video felt like a luxury I had to squeeze in, and spending time on that instead of on something that was supposedly “productive” was stressful. WTF? I’m disabled. I’m unable to work. So what am I doing? I’m pushing myself to work as much as possible anyway. Hmm. Not good.

Granted, I’m not “working” that many hours. I don’t have many “good” hours in a day, and I have to spend a lot of time cooking, cleaning, exercising, doing physical therapy, etc. Still, I am trying to do too much with my remaining hours. That’s why I have multiple posts I have been wanting to write for this blog for weeks, but haven’t been able to find the time to write any of them. I am writing this now only because I haven’t quite returned to my “normal” routine yet. Even so, my list for today has way too many items on it: a video call with my mom, a video call with someone who wants to pay me for some work that I don’t have time for but don’t want to turn down, taking care of some financial stuff, working on a book that I want to write, doing laundry, decluttering around the house a bit, watering the plants, writing this post, taking a walk, doing my physical therapy… that’s already way more than I have the time or energy for. Plus, I should really shower and leave time and energy for meals. I am trying to do too much, and it’s leaving me burned out.

Taking four days away from the world has done me so much good. It gave me the physical rest that I have so badly needed. It gave me emotional rest. But it also gave me insight. What I am doing is not working, and something has to change. I have always had a lot of drive. When I was in graduate school, working towards a PhD, at one point I worked as a teaching assistant and also the manager of my apartment building, while also volunteering as vice chair for the university’s Americans with Disabilities compliance board. Sure, I was young and still had energy, but YIKES! That was a lot! I’m not good at doing things part way.

On top of that, there’s the problem that while my body doesn’t function the way I want it to, my brain does, and my brain wants to do lots of things. I have a lot of interests, and I keep adding more and more, but not taking things away. During the pandemic I have added one new hobby, one new volunteer job, and one new paid job (the paid job is short-term and very little time, but still takes mental energy.) The thing is, I didn’t remove any of my old activities. Sure, I am no longer driving to doctors or doing any in-person socializing. I am not dating or going to family dinners. But while those things took up time, they also gave my life balance. Now I am lacking that balance. I am all work and little play, and that’s not sustainable.

I knew this before. I’ve been aware of it for at least a month or two, but I wasn’t sure what to do about it. I didn’t want to give anything up, so I kept going. I was managing ok, after all, so that meant I could continue, right? Obviously not. Because typically after this kind of fatigue, I take a few days to rest and then jump right back into things. I never feel this kind of mental and emotional resistance. Things couldn’t be more clear: it’s time to reprioritize. I am not sure what that will look like, but I know it needs to happen.

This is not the first time this has happened, and I’m sure it won’t be the last. I know this is something that many of us struggle with. So as I take some time to figure out how to better balance my life, I hope that you will do the same. It’s so much better to reprioritize before we get burned out, after all. But since it’s too late for that this time, I’m going to listen to my body and do it now.


Being disabled does not make me immoral

October 23, 2020

“Who came up with this system of the haves and the have-nots anyway?”
“That would be the haves.”

I can’t remember where I heard that, but it feels appropriate right now. That’s because I am frustrated not only by my lack of income, but especially by the scrutiny my measly income receives.

A few weeks ago, the New York Times broke a story that revealed Trump paid almost no taxes. Despite his huge amounts of money, he found ways around his obligations. Maybe the IRS took a close look at his taxes and determined it was all legitimate. Maybe not. Either way, he got away with it. And he’s far from the only one.

Meanwhile, I am receiving Social Security, housing, food, health insurance, and other benefits which allow me to sort of almost just about but not quite cover all of my basic bills. Of course, they don’t allow for “extras” like a vacation, big car repairs, a new used car when mine eventually bites the dust, or medical treatments that aren’t covered by insurance, and even without those things the money isn’t enough. So of course the solution is to try and earn money. Yet I am under such scrutiny that this is nearly impossible. And even without earning money, just living life is far too complicated because of the scrutiny.

The benefits cliff is not a new topic. It’s counter-intuitive to helping people get off of benefits. There’s an all-or-none setup that doesn’t work because my health is not all-or-none. Some months I can do more, some months less. Why should I be punished for that? But I digress.

I am not talking about the absurd benefits cliff itself, but about the intrusiveness of the entire setup. It is invasive and insulting.

I no longer have any financial privacy. Multiple benefits offices have me fill out detailed and intrusive forms. They look not only at my taxes, but also at my bank statements, including PayPal and Venmo. They question every deposit. For some, I am required to provide proof of the purpose of each deposit. When I can not show a cancelled check because my bank no longer provides these on bank statements, I must then pay to get them from the bank. When a friend gives me money, the office expects a notarized statement as to its purpose.

Seriously? I’m supposed to ask friends and others to notarize a statement about why they paid me?!? And about about strangers who send me $50 via PayPal or Venmo for buying some random thing that I’m selling? This is completely unrealistic, not to mention embarrassing! How exactly am I supposed to ask for this?

Example: “Do you remember how seven months ago I paid for that gift for Susan? And you know how you reimbursed me for your half the next day by Venmo? Could you give me a notarized statement that you weren’t paying me for anything but were just reimbursing me? I’d rather not say why.”

Yeah, right.

Then there’s actually trying to earn money. The limits for what I can earn without losing my disability benefits are really low – lower than my actual benefits. But long before I hit that number, there’s another number that’s scary: the one that triggers greater scrutiny from the government. Technically, reaching that number every month shouldn’t be a problem. After all, I wouldn’t be earning enough to get kicked off benefits. Still, we all know that the last thing we want is more attention here, especially these days, so I want to avoid getting anywhere near that number. Why give prying eyes more reason to examine me?

I am hugely resentful. Why can’t I simply try to earn as much as possible? Chances are I wouldn’t earn enough to get kicked off benefits (every time I have tried to work in recent years, I got a lot sicker and had to give up) but I would sure like to try and earn enough to buy some new clothes! And why can’t I simply live like a normal person who lays out the money for a shared birthday gift?

I get that the government wants to avoid fraud. They don’t want me getting benefits while also receiving $5000 per month from various friends and not reporting it on my taxes. But really, what are the odds of anything like that happening? Are there really going to be so many people on benefits who find a way to get enough money that doesn’t have to be reported on their taxes that it justifies this level of scrutiny? Would it really justify the salaries of the people paid for this scrutiny? Meanwhile, they make me explain that the $50 deposit into my checking account was a Chanukah gift from my aunt and no, I don’t wan to ask her for a notarized letter confirming that.

Now, let’s say someone was being deceptive. They received benefits they shouldn’t receive. The average SSDI payment for adults in 2020 is $1258 and the average SSI payments are $783 for an individual and $1175 for a couple. Meanwhile, we watch rich people and companies avoid paying millions of dollars in taxes. One rich person’s yearly taxes, if properly paid, would probably cover the lifetime disability benefits of quite a few people.

A lot of people find it unfair that they pay more in taxes than rich people do. I feel the same. But at the moment I am pissed that they get away with it while I need to justify every penny. Where is the scrutiny? I find it hard to believe the government couldn’t catch these folks if given the resources. Wouldn’t it make more sense to devote the salaries of staff to catch someone who owes millions, instead of focusing on disabled folks, the majority of whom are just trying their best to cover their bills?

A lot of people argue that the big difference is that disabled folks are living off of government benefits, so the government has to be sure that money isn’t being misspent. Uh huh. Tell me, do rich people not use government services? I’m pretty sure they use government infrastructure, their businesses benefit from people who attended public education, many of their businesses thrive because they pay such low wages that employees must use food stamps, and so much more. Many of them attended public school and some were even on food stamps themselves in the past. They benefit, even if their line is more squiggly than my direct one.

I am not suggesting that benefits should be handed out without any follow-up but maybe, just maybe, our current system goes absurdly overboard. I think we need a system where I can be reimbursed for laying out money for a birthday gift without having to jump through hoops.


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