Earwax: sometimes it’s the little things

January 10, 2019

It was one of those days. I had a checkup with my primary care physician and long list of things to discuss. In addition to all the stuff I know about, I feel like something else must be wrong. My naturopath thinks so, too. But I don’t like the possibilities! On top of that, it was earlier than I’d like. Still, I was determined to make it all work.

The plan was simple, but also overwhelming: get up early, get dressed, make lunch, eat breakfast, stop at the library, then go to my appointment. After the appointment I would pick up something from a friend, then go to another friend’s house to hang out for the afternoon. It would eat up all of my energy and I would be exhausted, but I felt it was worth it.

I got up early. I got dressed. And then things went south. I was awfully tired, and while I cut up fruit for part of my lunch, my hand slipped and the knife sliced my finger. Oops! The blood gushed and I rushed to put my finger under the faucet, then wrapped it in a paper towel that quickly soaked with blood. Not good. After a bandaid, I decided I didn’t need more fruit and put it in the fridge. I finished putting together the rest of my lunch, then moved on to breakfast, all the while wondering if I would need stitches. I really didn’t want to deal with stitches! I was already headed to the doctor’s office, at least.

As I left my apartment, I saw a woman walking a dog and asked to pet him. That helped a lot! When I got to my appointment I saw a message on my phone that picking up the thing from my friend got cancelled. Part way through the appointment, I got the message that my friend had to cancel hanging out. Which means I never had to make lunch in the first place! A couple hours later I was eating lunch at home anyway.

Things with the doctor went pretty well, though we ran way over time and still didn’t cover everything, which frustrated both of us. He looked at my finger which had, thankfully, stopped bleeding! What a relief! Then it was time to get the earwax out of my ears.

If you’ve ever had issues with too much earwax, you can see where this is going. I hadn’t had it done in at least a year, maybe two. When the doctor looked in my ear he couldn’t see my eardrums but that was no surprise to me. It was uncomfortable and sometimes it even hurt. I could *hear* the wax when I touched my ear and it moved. I had been looking forward to this.

Luckily, the medical assistant had time to do the ear irrigation. It took a lot of sprays with the solution, but finally the biggest chunk of wax I’ve ever seen came out of my ear. I mean, I’ve had big chunks of earwax come out before, but this was almost double the size of what usually comes out. How did it even fit in there?!?

And instantly my ear felt better. It felt empty. Clear. Clean. The discomfort was gone. The sounds were gone. Then she did the other ear and it felt just as good.

By the time I went to get my blood drawn I was feeling great! Sure, I’m fatigued and my thyroid med isn’t working properly any more and we think there’s something else going on but we don’t know what and I might have to start taking adrenal medications and and and…. but at least my ears feel better!

I suddenly had no plans in the afternoon. I put in my earbuds so I could make a phone call and was amazed at how well they fit. I didn’t realize they were uncomfortable before, until now they suddenly weren’t any more.

It was a shit show of a morning, full of blood, anxiety, and worry. But hey, at least my earwax got cleaned out. And that made it all a lot better.

Now it’s time to go research various doctors and medications that my doctor and I discussed because, as we all know, a chronic illness patient’s work is never done.

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Winning the battle against my fears

December 22, 2018

I used to travel a lot. I flew to Florida twice a year to visit my grandparents, I drove to New York twice a year to visit my other grandparents. I drove to Maine many times a year to spend a weekend or a week in my family’s vacation home there. Sometimes I flew to another state to visit friends. On top of all of that, I would take one week long bigger trip to someplace I hadn’t been before. Yes, I knew how to squeeze every last hour out of my vacation days! (There were many exhausting long weekends!)

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My last trip overseas: London

That was my life before. Before my chronic illnesses became quite so disabling. I can no longer drive the 4 hours to New York. I have not been on a plane in 8 years. Eight years! I used to fly 3-4 times every year and now…. I feel stuck at home.

Travel opens up our eyes to new experiences and unfamiliar cultures. Without that, my world has been feeling very small. I first went overseas in college and I immediately got the travel bug. I have been to a handful of countries, with tons more that I want to see. There are also so many places I want to see right here in the U.S. But that requires flying.

I was never scared to fly before, but now I am. I’m not scared of terrorists or of crashing. I’m scared of triggering a flare-up of my health issues. I’m scared of feeling sick while trapped in the air. And it’s holding me back.

The first years of my self-imposed ban flying were absolutely legitimate. Flying would have been horrible for me. Even car trips to New York when someone else drove were hard. I barely saw my grandfather in New York in the final years of his life, and that was brutal. We spoke on the phone often, but still.

But I realized recently that it’s no longer my health that’s stopping me as much as my anxiety. Sure, there are health issues too, but I think that I probably could have managed some travel in the last year or so. It’s time.

So over the summer I promised myself that this fall I would go someplace I haven’t been. But I’m not ready to fly. If I can’t fly and I can’t drive far, that means taking a train. Trains are pretty good for me, and I will write a separate post about my experience with Amtrak’s accommodations for folks with disabilities. Still, they’re limiting. I chose Philadelphia. I’ve heard good things, I’ve never seen the city, and it’s a reasonable train ride.

Not long after this decision I began seeing a therapist, and she encouraged me to try flying as well. I want to start with a very short flight, so Washington D.C. seems reasonable. I flew there once many years ago (the times I drove) and it’s super fast. I figured I would go to Philly first, then DC later. If those went well, I could build up, and maybe finally manage to visit friends on the west coast, see the Grand Canyon, and more! Maybe I could even visit my friend in England! But first things first: a train ride to Philly.

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Last week I saw the Liberty Bell!

This was HARD! Buying the train tickets took a lot of emotional strength. It was difficult to find an AirBnb in the neighborhood I wanted that was on the first floor. I thought through every aspect of the trip many times: what medications to bring, how to handle food, how to manage my limited energy. I was ready. I had planned. But I knew that things could fall apart at any time without warning. Should I really do this? Maybe it was all a big mistake!

Less than a week before the trip I had a bad night. My adrenals crashed, which happens sometimes, and it’s the worst of my symptoms. I was nauseated, fatigued, weak. I was shaking, crying, and scared. And I panicked.

I started to think, not for the first time but definitely more strongly, that I should cancel the trip. That was the last day that I could still get a reimbursement on almost everything. I could have a quiet week at home. Things had been so hectic. I was planning for an event that week. Yes, I had planned a full 2 days between the event and the trip so that I could rest and pack. That was plenty of time. The event wouldn’t be that tiring, it just took planning. Still, it was overwhelming. I couldn’t manage. I could cancel the trip and stay home and get shit done around the apartment. That sounded really nice!

Thankfully, I had a therapy appointment the next day and she talked me down. I cried the entire time. I was crying before we even started talking. I was a mess of fear and anxiety. I had put a ton of pressure on myself, because if this trip was a failure, I knew I’d be too scared to try travelling again. But I WANTED to travel. And if I didn’t try, I’d never know.

After an hour of talking, I felt better. Not great, but better. I would do this. But I was still nervous.

The next day, I felt confident again. I could do this! What changed? One thing: I felt better physically. My anxiety gets much worse when I feel sick. That makes sense, since my anxiety is about being ill.

For the next few days I slowly got shit done. I wrapped up things at home. I told myself I didn’t need to do it all. I went to the event. I had many days of low energy and I let myself stay home and rest. I cut more things off my to do list. I kept it to the bare minimum. Now, a full week after I got home from the trip, I still haven’t done some of those things, and that’s ok! 

The day came. I had packed the day before. I didn’t need to leave until noon, something I planned very intentionally. And I did it. I got on that train.

I will probably tell you about the trip another time, but the short version is that it was great! I didn’t do nearly as much as I would have liked, even given my health limitations. One day I was fatigued and couldn’t go out much. One day I was in so much pain I could barely walk. Still, I did it. And somehow, miraculously, I didn’t have any adrenal crashes! Almost as amazing (and probably related,) I spent the last 2 days with friends who ended up getting very sick, and I never caught their bug. Incredible!

I came home feeling like it was a success because I traveled someplace new and my health managed ok. That makes me feel much better about getting on a plane to DC. Not great – I’m still nervous, and when the time comes I might panic again – but at least now it feels doable. And while my grandparents are sadly no longer alive, I have several cousins and close friends in New York, and in a few months I will take a train down there to visit them.

Yesterday I went to therapy and she eagerly asked how my trip was. I was happy to tell her about my success. But honestly, even just going was a huge win for me, no matter how it turned out. I was scared and anxious but I went anyway. I’m proud of that.


Taking a day off

October 27, 2018

There’s this idea that every day is a “day off” when you don’t work a full time job due to disability. And in some ways that’s true, if you define a “day off” as a day that you don’t work 8 hours at a paid job. But anyone with a disability knows that’s totally not how it works.

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Days that are not days off:

  • Days that I have one or more medical appointments. Between getting ready for the appointment, driving to and from the appointment, the appointment itself, and the research to follow up on the appointment, even the shortest appointment is never all that short. I often have to rest for anywhere from 2 hours to the rest of the day after an appointment. It’s not unusual to wake up and do nothing but get ready for the appointment until it’s time to leave the house, then get home and be too tired to do more than eat a meal (if that) and watch tv. It can kill a day.
  • Days that I have nothing scheduled and feel obliged to get shit done around the house. I used to think of this as “day off” when I worked a full time job. The difference is, back then I might spend a few hours getting shit done, then go out and do something fun with a friend at night. Now, I can do one or the other, not both. So spending the day washing dishes, doing laundry, cooking, paying bills, and handling paperwork is definitely not a day off. Bonus: I usually forget what a toll these “easy” tasks take on my body, and end up feeling like crap by the end of the day.
  • Days that I run errands. Again, this used to be a great “day off” activity because I could get stuff done, then have fun later. Now, I use up my energy with groceries and other errands, and get home feeling too tired to do anything else. Worse, if the errands involve big stores with a lot of walking and florescent lights, I often feel especially sick at the end of the day. Worst of all is clothes shopping, where I usually don’t even find what I need, but feel sick afterwards.
  • Days that I don’t do anything “productive” or fun because I feel like crap. That’s called a sick day, not a day off. And it sucks. Big time.
  • Days that I try to get things done but have too much pain, brain fog, or energy drain to get anything done. I spend the entire day trying to do stuff, then finally give up because nothing is getting done. By the time I give up, I feel even sicker than I had before, plus I feel guilty for having “wasted” a day.
  • Days I deal with medical or benefits paperwork. It’s true that I don’t work a paid job, but if I got paid for the many many many hours I spent dealing with affordable housing paperwork, SNAP paperwork, fuel assistance paperwork, health insurance paperwork, emailing with doctors, researching treatments, researching diagnoses, or any of the myriad other stuff I have to do, I would probably earn enough that I wouldn’t need those benefits. Some irony there, eh?

Do you know what is a day off though? Today. Today was a fantastic day off! Here in the Boston area, we knew a nor’easter was coming. It’s warm enough that we knew it would be rain, not snow, but it was still going to be a nasty storm. I didn’t have any plans scheduled aside from dog sitting. I figured it was the perfect day to stay home and be cozy. I ran my errands yesterday, so I wouldn’t have to do it today.

I set myself 3 goals for today: (1) Finish the novel I’ve been reading so I can finally find out who the killer is. (2) Bake the apple crisp I’ve been wanting to make – mostly so I can finally eat the apple crisp. (3) Cuddle with the dog.

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It was such a beautiful day. I did end up doing a couple of things on my to do list, but only because I had time and felt like it. There was no rush. No pressure. No guilt. You know what else I did? I cuddled on the couch with that dog above and finally finished my novel (damn, I should have guessed she was the killer!) I made the apple crisp that I’ve been wanting to make for a month (doesn’t it look yummy?) and managed to not eat too much of it. I walked the dog outside, but otherwise stayed in. I wore cozy clothes all day. I watch a little tv. I relaxed.

And you know what else? I didn’t stress out over anything! No stress, no worry, no guilt, not concern. I didn’t do the million and one things I need to be doing this week, and that’s ok! Too often, I spend every day pushing myself to “be productive” until I burn out, feel lousy, and have to spend a day resting. It’s so much more pleasurable to rest before I get to the point of feeling like crap!

I have been trying to do this more often. Mostly I fail, but every now and then, like today, I manage it, and it’s amazing.

Tomorrow I have plans to see a friend in the afternoon and to do some phone banking from home at night for the upcoming election. I’m sure that in the morning I’ll try to do some of the myriad items on my list. But thanks to the relaxing day I just had, I will feel rested and relaxed and ready to take it on. Or I’ll remember how good today felt and I’ll choose to have some more quiet time instead. Either way, it’s a win!

What are some days that aren’t really days off that I forgot to list above? Please let me know in the comments! And if you haven’t taken a day off lately, be sure to do that soon. Because we all need that sometimes.


Getting back to “normal” – whatever that is

October 15, 2018

I’ve missed you! This blog is one of many things that seemed to fall to the side as I struggled to keep up with the million and one medical appointments I had over the last month and a half. I kept wanting to write, but just couldn’t manage to pull myself together enough.

For weeks it felt like all I did was go to appointments. “What day is it? Well, I’m at occupational therapy right now so it must be Tuesday.” When you keep track of the days by thinking about what appointment you’re at, things have gone too far.

Thankfully, things began to slow down a bit 2 weeks ago. Unfortunately, right around that time I was feeling really fatigued. It made sense, given the physical and emotional stress of all of those medical appointments, right? Plus we were having unseasonably humid weather. I took more supplements. I pushed through.

It got worse.

I rested more. Watched tv. Read books. Let my chores wait and cancelled plans I had been looking forward to. I spent my time resting whenever I wasn’t at an appointment. It still got worse, and my stomach started to act up, too.

I thought about my diet. Had I eaten anything new lately? Some apples. But I made sure they were organic (a few autumns ago my stomach acted up and I learned it was the pesticides on the apples.) And I had only eaten 4 apples so far this season. I couldn’t think of anything else until a few days later when I was literally doubled over in pain, barely able to even walk from my couch to the bathroom. And then it hit me all at once: iron. I had started taking iron supplements.

The next day I stopped taking the iron* and by that night, I was doing a bit better. The next day felt even better than that. And now 4 days later, I feel back to normal! Whatever the hell that is.

I’m still tired. I’m in more pain than usual, mostly in my back, neck and shoulders. That’s from last week’s “rest” time on the couch, when I had horrible posture. I felt too bad to bother with it, and I didn’t do my physical therapy exercises either, plus my physical therapist had to cancel our appointment, and now I’m paying the price for all of that.

Still, I feel so much better than I did before, that I’m managing ok. And I only have 2 medical appointments this week! My friends would think that’s a lot, but you and I know better. After weeks of having 3-5 appointments every week this is nothing! And today’s appointment was only 12 minutes away, so there wasn’t even much driving involved. I had enough energy afterwards to go grocery shopping, then I came home and had lunch.

I am now sitting in cozy clothes, catching up on email, finally writing here, and generally feeling a bit more in control of things. It feels so good! In the back of my mind I think about how I still don’t feel up to dating, so I’m putting off signing up for a new online dating app that looks interesting, and I’m intentionally not thinking about how much I want a dog and am still not able to care for one. Ok, I think about it a little. But I try. Overall, though, I feel better physically so I’m trying to focus on the good stuff and ignore all of the things I want to do and still can’t.

Hopefully this week I can get back to having some balance in my life and in my schedule and then, well, maybe I can catch up on the many things I didn’t get to do over the last couple of weeks. After all, sick or not, some things still have to be done.

*In case you’re wondering about the iron, my doctor wants me to try taking a small dose. I was already taking 1/2 the recommended amount. We’ll see. About 5 years ago I had to have iron infusions because I couldn’t tolerate supplements. I was hoping to avoid that this time around, but no luck. I’m anemic so if the supplements don’t work, I’ll have to do the infusions again. But that’s a problem to deal with next week. For now, I’m focusing on getting back to “normal.”


Getting a break from the nightmares

August 17, 2018

While I have had symptoms of chronic illness for over 25 years (wow, that makes me feel old!) I only started having recurring nightmares in more recent years.

First there were the dreams where I felt the impending diarrhea and couldn’t find a bathroom, then when I finally found a bathroom the toilets were either set way too high on the wall (like, 4 feet off the ground!) or there were no doors on the stalls. I was trying to hold it in and feeling more and more desperate, but I couldn’t find a usable toilet that I felt comfortable with. I always woke up feeling stressed out and anxious.

Then there were the dreams where I’d be having a lovely time with family or friends. We would be passing food around the table and without thinking I would take a bite of bread or a cracker and after swallowing I would realize that I just ate gluten! Again, I would wake up stressed out and anxious. And wondering if I had really eaten gluten.

The dreams didn’t happen nightly or even weekly, but they kept returning. And no wonder. I was fastidious about avoiding gluten, but somehow I occasionally was glutened. And there was always the fear that I would slip up and eat it by mistake. There were multiple times I needed a toilet desperately and had trouble finding one. These were real life problems.

And the thing is, they still are. I haven’t been glutened in a while, but it’s happened this year, and I’m more nervous than ever about avoiding gluten. As for the diarrhea, I’d love to say that’s a thing of the past, but it’s not. It’s less frequent, and I’m incredibly grateful for that, but it still happens.

So imagine my surprise when I realized the other day that I haven’t had either of those dreams in months! I was free!

Will I ever have those stress dreams again? I have no idea. Even if I don’t, maybe there will be others. Again, I have no idea. All I know is that I’m not having them NOW!

I would love to say it’s because I’m less stressed out, but I’m not. In fact, lately I have been feeling more overwhelmed than I have in a long time. But at least I can get some rest in my dreams. I guess that’s a start.


Am I losing my joints?

July 30, 2018

First it was my wrists. Then my knees. Then my fingers and then my toes. Every few years some new joints began to hurt. Until this year.

Suddenly, all at once, things are doing downhill fast. In the past several months I have developed pain in my feet, thumbs, and shoulders. The foot pain is from arthritis, and it is especially disturbing because I had x-rays done 3 years ago that were fine. In only 3 years there has been marked deterioration and we don’t know why. The thumb pain is from tendonitis, something I’ve never had before. We don’t even know about the shoulder pain yet.

A few months ago, none of these bothered me at all. Now, walking has become more painful than ever, my favorite hobbies of crocheting and knitting are extremely limited, reaching for things is painful, picking anything up hurts, sleeping is harder, and I am freaking out.

Why is this happening all at once?!? Well-meaning friends suggest that it’s weather-related, but I know my body, and it’s not that simple. And besides, let’s say it’s the weather for the sake of argument. How does that help me? That only means that for months every year I’ll be in extra pain? And over time, as the climate continues to change, it will only get worse. So that’s NOT reassuring. Besides, it’s not weather-related. The tendonitis could be, but that began before the heat and humidity set in. And weather did not cause the arthritis in my feet or the bone spurs that are developing.

I keep wondering: how much worse will this get?

For years I have assumed that eventually all of my joints would be come painful, but I expected things to continue in that every-other-year pattern. I would have been in my 50s before things got really widespread. Now, in my 30s, I’m seeing the progression and it ain’t pretty. What will happen if I can’t use my thumbs? How will I function? What if walking becomes even more difficult? What if what if what if?

What ifs aren’t helpful, but I’m only human, and I can’t help but think about it. I’m following doctors’ orders: stop standing on my toes, limit crocheting and knitting, do handy therapy exercises, wear new orthodics…. but it’s not helping. At least, not yet. And besides, the goals with those are to lessen the pain. The doctors agree that this new pain will be permanent. And that makes it extra difficult when well-meaning friends hear about what’s happening and say that hopefully it will go away. When I say it won’t, that this is permanent, they get uncomfortable. They want to offer reassurances but there are none to offer. I get that. I’m the same way when someone I care about is hurting. Still, it sucks that people keep suggesting it will get better. Haven’t they learned? ALL of my pain is permanent. Sometimes it improves, but it never goes away.

Today is a calm day. Last week I was so upset that I couldn’t even write about this. I’m sure I will have many more calm days and many more upset days. In the meantime, I need to find some rational, logical part of my brain to start figuring out why my joints are suddenly causing me pain so much more quickly than they used to. Then maybe, just maybe, I might stand a chance at slowing things down.


I wish I could stop my fake smile

July 21, 2018

Even at 12 years old, I knew not to milk my situation. If I exaggerated the pain I was in, cried unnecessarily, or complained too much, it would come back to bite me in the butt later. I was right, of course. Even without all of the theatrics, some doctors and teachers suggested my pain wasn’t real, that I was just trying to get attention. Assholes. The thing is, this idea that I shouldn’t exaggerate anything boomeranged, and soon I was pretending I was ok even when I wasn’t.

Sometimes that’s a good thing. For me, faking it until I make it can help. And I hate having people constantly ask me what’s wrong, so looking like nothing is wrong can help to prevent that.

But then, sometimes it’s not so good.

Today a friend stopped by unexpectedly. I was NOT in a good place. I’ll probably right about that another time, but basically, I’m in rough shape. The pain has been worse lately, and it’s spreading to more parts of my body for some unknown reason. I’m worried about the future. I might have to move out of the apartment that I love. I’m frustrated and overwhelmed and, mostly, very scared.

I started to talk about some of this with my friend. I could feel the start of tears in my eyes. But I didn’t want to get too far down the rabbit hole. If I tried to explain everything, it would just lead me to focus more on the thing I’m trying to get off my mind for a while. So I said I needed to stop talking about it. And a second later we had changed the subject and I found myself smiling.

Now don’t get me wrong, smiling is a good thing, especially when you’re happy. But I wasn’t happy. I was smiling because I am used to plastering that smile on my face, even when I don’t want to. It’s what made the LTD and SSDI trials so hard: I was supposed to let them see how I really felt, and I didn’t know how to do that anymore. After so many years of fake smiles, how could I stop?

Before my friend showed up, I was definitely not smiling. I wasn’t smiling after he left, either. But with him here, I smiled. I thought to myself, “I should stop smiling. He knows I’m scared and in pain and he’ll be here for me. I want to stop.” But I couldn’t.

When my grandmother died just a few years ago, I cried during the funeral. Later, at the shiva (a Jewish tradition where friends and family gather to console the bereaved) I found myself smiling a lot. One relative I didn’t know very well even commented on how great it was that I could focus on the good parts of my grandmother’s life and remain so cheerful. Little did he know. I wasn’t cheerful. It was an act. I was smiling, I had a bounce in my voice, and I was miserable.

My fake smile was helpful today at the grocery store. I looked and acted normal, so no one asked any questions. But with my family and friends, sometimes I want to stop smiling.

If only I knew how.


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