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.”


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.


Feeling too disabled to protest

June 29, 2018

Like in many cities around the country, there will be a big protest in Boston tomorrow, and I won’t be there. Not because I don’t want to be there, but because my health stops me.

At first I thought I might borrow a wheelchair like I did a couple weeks ago for the Pride parade. A friend even said she’d push the chair, and I really appreciated that. That spark of hope lasted for about 45 seconds. Then I remembered the weather forecast.

Until now, we have had surprisingly not-horrible-by-my-standards weather for this time of year. But that ended this week. And tomorrow is supposed to be the worst of them all: 97 degrees and a dew point that the forecasters are calling “oppressive.” The thing is, I struggle when the dew point is what everyone else considers reasonable, so you can imagine how well I do when it’s “oppressive”! For me, that means difficulty breathing, lots of sweating, my already suffering adrenals struggling even more to do their job, more pain than usual, etc. I could end up suffering not just for a day or two. I could have a major health setback. So I can’t go.

I would like to participate in some other substantial way. I can’t donate to funds, since my income doesn’t even support my own expenses.

So I do what I can. I post a lot on social media to make people aware. I don’t know how many people are actually seeing what I post, or how many care, or how many didn’t already know what I’m posting about, but if I get even one person to vote this fall who wouldn’t otherwise, then it’s worth it.

I am trying to humanize the situation for my friends and acquaintances. For most of them, Trump’s and the GOP’s policies are horrible, but don’t affect anyone they know. I’m trying to show them that isn’t true.

Of course, this is harder because I won’t post on social media about being on SSDI or food stamps. My “real” friends know, but I don’t want to share that online. Still, I do talk about how my health insurance is at risk, and the real consequences that could bring for me. I talk about not being about to work, about being queer, about being Jewish, about being a woman, and how these policies will affect me because of those various aspects of myself.

It’s not enough, but it’s a start.

I feel incredibly frustrated and yes, even angry, that I can’t protest tomorrow. Over and over I have had to miss out on these protests. Instead, I am trying to remind myself that maybe what I am doing is helping in some small way.

And in that vein, dear reader, let me ask you to please vote! I know that many of you aren’t in the U.S. but I’m guessing it’s important for you to vote, too. And for those of you in the U.S. with chronic illness, it is especially important for you to look at who is going to be on your ballot this November and what their policies are. Our lives are at risk. We are facing limits to healthcare access, cuts to social security as well as medicare and medicaid, not to mention cuts to food stamps and housing services. There is so much more that I could say, but I will just mention these few things that on their own should worry us all. This November we will see many seats in the House of Representatives as well as the Senate up for grabs, and it’s important to vote in folks who will fight for us, not hurt us. At the same time, many governors’ seats will be voted on, as well as other state and local seats, and those are also super important. If you ever want to learn more about any of this, just let me know and I will be glad to discuss it.

Either way, if you are in the U.S. then put November 6, 2018 on your calendar and be sure to vote! And if you won’t be able to get to your polling station, contact your town or city hall well in advance to get an absentee ballot. You can vote from home!

Even if, like me, you can’t get out to protest in person, you can protest with your ballot. Let’s do this!


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