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.

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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.


An unexpected cause of pain: being short

May 19, 2018

Of all the things in life that can cause pain, you would never think of being short as one of them, would you? I’m not talking about being short due to some genetic condition or illness. I just mean, you know, short.

My mother is 5’2″. My father’s mother was 5’3″ before she shrunk in her later years. I was expected to be at least my mother’s height, but then scoliosis caused me to stop getting taller as my spine compressed a bit, and I ended up only being 5’1″. Ok, almost. Hey, my driver’s license says 5’1″ and I’m sticking with it!

Two weeks ago I was diagnosed with arthritis in the joint of the big toe on my right foot. Since that toe is essential for walking, and now it’s painful, this isn’t good. And I’m only in my 30s, so I need it to work for a long time to come. This sucks.

There’s a long list of things my doctor says I can no longer do: run, jump, sprint, stand on my toes, wear high heels….. hold on! Back up! Not stand on my toes?!?

The rest of those are no problem at all, but I stand on my toes All. The. Time!

In these past 2 weeks, and in the 2 months of pain leading up to the diagnosis, I realized that I stand on my toes even more than I had thought. I do this for things that you would never guess (unless you’re a fellow short person.) Some of it isn’t too surprising: reaching items on the top shelf in the grocery store. Looking through a clothes rack that’s too high (why do stores put them so high up?!) But then there are the things you wouldn’t guess, like reaching the shelves in my kitchen cabinets and getting things off a shelf in my closet.

And then there are the things that have been shocking my doctors and friends as I mention them. Things like sitting on a bus or subway, where I’m not “standing” on my toes, but my toes are in that same position just so that they can touch the floor. Ditto sitting on a toilet. This is true at home, where I keep a step stool next to the toilet to rest my feet on. I began doing that years ago for comfort, so that I could actually sit without leaning far forward to put my feet down, during the hours that I would be on the toilet dealing with diarrhea and nausea (thank goodness that’s mostly improved!) It’s so much worse on public toilets, which tend to be higher. When I drive, I mostly press the pedals with my toes. After all, it’s hard to get my foot flat on the pedal, thanks to my short legs.

Then there are chairs and couches. When I was couch shopping, I had to try a lot of couches before I found one where my knees could bend. Most are so deep, my knees don’t reach to the end of the couch. But even so, my feet don’t entirely touch the floor unless I put a pillow behind my back, which isn’t the most comfortable thing. Without that, I have three options: put my feet on the coffee table, tuck my legs up on the couch under me, or have only my toes on the floor. The first I can only do for so long, so I usually do the second, which leads to neck and back pain.

When I had surgery on my other foot a few years ago, I spent several months in casts. I wore a sneaker on my other foot with a lift on it, so that my hips wouldn’t be misaligned. Part way into my recovery, I noticed something shocking: my neck and back pain were gone! I think it was for a few reasons:

First, I was sitting upright. I wasn’t leaning to the side or putting my feet up under me or next to my body. I couldn’t. I was mostly sitting with my feet up on the coffee table, to keep the injured foot elevated. Sometimes I sat upright, and with the extra few inches I had, my feet could now rest on the floor!

I also found that not having to reach up so far to get things out of kitchen cabinets made a big difference for my neck. It’s simply a matter of degree. We all reach up, but I had to reach up more, often over my head, and I guess those movements all added up.

On top of that, when I washed dishes, instead of hunching my shoulders as I reached up over the edge of the sink, then down into it, I was now simply reaching straight down. Wow!

Finally, I wasn’t driving. At all. I was recently driving a much taller friend, and she commented that my shoulders don’t go back against the seat when I drive. Well of course they don’t! How could they? I would need to have the steering wheel practically in my face in order to put my shoulders back. My physical therapist told me to use a lumbar support. I mentioned it would be annoying to adjust it every time I leaned forward and it slipped out of place. She said I shouldn’t be leaning forward. But she’s an average height. So doesn’t realize that I have to lean forward just a bit to reach the radio, heat, and air conditioning controls, not to mention seeing all sorts of awkward angles when I make turns or park.

This society is simply not designed for short people. A short friend told me about the joys of traveling to India, where the average height is lower than it is here in the United States. She said that she marveled at her ability to put her feet on the floor of the bus when she sat, and to reach items on shelves. It sounds marvelous!

Unfortunately, I live in a society designed for taller people. Until recently, I only thought of this as an inconvenience. I ask strangers to get things off of shelves in stores for me. I keep a step stool in every room of my house so I can reach items. I don’t use the top shelves in my kitchen cabinets because, even with the step stools, I can’t reach them. I can’t carry suitcases, tote bags, and other items, the way taller people do, because I can’t let my arms hang down; the items would drag on the floor. Instead, I need to raise these items up to clear the ground, and that’s hard and sometimes impossible.

Ok, I live with those inconveniences.

But now I have realized the pain it has caused me. And I resent that. Not that I can change it, but I resent it.

At home I will try to wear shoes with lifts, which is absurd, because I should be able to walk barefoot in my own home if that’s what I want to do. But there are no solutions to driving, sitting, and the myriad other ways that our society is causing me additional pain, simply because I am short.


Trying to manage when it feels unmanageable

May 7, 2018

Somehow I used to work 45+ hours per week, cook, clean, do errands and chores, and have a social life. How?

Now I feel more overwhelmed than I did then, and I do a lot less. In some ways. In other ways, I suppose I do a lot more, but it’s hard to remember that. Our culture is so wrapped up in “jobs” and “what do you do for work?” and “you must have a lot of free time without a job” that it’s easy to feel like a failure for being overwhelmed without the 9 to 5.

CR - time and overwhelm

I think that my mental and emotional tolerance for these kinds of things is way lower than it used to be. But I also know that I do a lot. Dealing with pills and physical therapy exercises take up time. So do meal planning, clothes planning, and all of the other planning around my health issues. Meditation, reading up on symptoms and treatments, and writing this blog also take up time. Then there are the many, many medical appointments. And that’s all before we talk about actual acute symptom management. Not to mention, the extra hours I need to spend in bed and resting on the couch. Put that all together, and that’s my full time job.

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Then there’s my work. It’s not a 9 to 5, but it’s all I can manage. Sometimes, it’s more than I can manage. I sell craft items I make. Or at least, I try to. I have an online coaching business. I just tried to start another online business, but it was too much, and now I’m in the process of shutting it down. I do dog sitting. Not every day, but a little is better than none. It has the advantage of giving me canine company. Right now, this beautiful dog is snoring next to me!

There’s also non-work work. I do a little bit of volunteering for a support group that I’m in. I speak to friends, friends of friends, and friends of friends of friends about health issues and try to assist the best that I can.

On top of all of that, I have typical adult stuff: laundry (which I should actually be doing right now,) grocery shopping, cooking, dishes, cleaning, other errands. This week I finally got a haircut, which was about 3 weeks overdue. I wanted to do it sooner, but between feeling sick, being busy, and simply feeling overwhelmed, I wasn’t able to do it.

I have personal projects. I am currently writing a book about living with chronic illness. I am trying to clean out the clutter in my closets. I’d like to experiment with some new recipes. I want to spend more time reading.

On top of all of that, as if it weren’t already enough, I’d like to socialize more. Over a year ago I left the city and moved out to the suburbs. I want to make more friends out here. I want to spend more time with my old friends. I want to date. After a recent breakup I finally feel ready to date again, but I have no time or bandwidth for it.

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It’s true that I’m less efficient than I used to be. Let me sit in front of the computer to work for an hour, and I will accomplish less than I could have accomplished in an hour 10 years ago. Some of that is illness-related. Some of that is being out of practice. But I am working for that hour and I do get shit done.

It’s just that there’s always more to do than I can manage. And something’s gotta give.

Which is why I am not dating. Which is why I am closing one of the businesses I started. Which is why I don’t socialize nearly as much as I’d like to. Which is why I don’t have much fun in my life these days. Which is why I am stressed out and overwhelmed and feeling like a failure. Sure, I know that I am not a failure. It’s just that sometimes it’s hard to remember that. To really believe it. All I can do is keep remembering how much I do, and strive to eventually get to a place where I’m less overwhelmed.

And for you, dear reader, I want you to know that you’re not alone. In the chronic illness world, we often seem to have 2 modes: doing a lot that never seems to be enough and feeling overwhelmed and stressed out; or doing very little “productive” stuff while we rest and take care of our health and feel guilty about not doing enough.  But we shouldn’t feel guilty. We are doing the best we can to take care of ourselves. Some folks are even taking care of families as well. It’s hard. Fucking hard. And we deserve praise and congratulations for everything we work so hard to do, even when it’s not as much as what we want to do. So give yourself a figurative pat on the back. And then go do something FUN and don’t feel guilty about it. You deserve it.

Note: I have written many times about being on benefits, so some of you are probably wondering why I’m busting my butt with multiple jobs. That is because when I add up social security, food stamps (SNAP), and fuel assistance, I still fall far short of what I need to pay my expenses. I live in affordable housing and my rent is currently over 90% of my social security income. Then I need to pay for utilities, car insurance, gas, car maintenance, medical treatments that aren’t covered by insurance, and maybe once a month I might even go out for a cheap meal. On top of all of that, I am nervous about the future state of benefits in this country, and don’t want to rely on them. I would much rather earn my own way and be independent of them. For now my goal is to earn enough to support myself with benefits. Down the road I would like to get off of them, though I know that’s a rare and difficult thing to accomplish.


Watching dawn

April 19, 2018

The first time it happened, I was baffled. Waking up during the night isn’t so unusual, but staying awake for hours before falling asleep again is beyond odd.

It happened a bunch of times, but finally I got into a good sleep pattern. Between my CPAP for sleep apnea, various supplements, good bedtime routines, etc., I was doing ok as far as sleep went. Not fantastic, but ok.

Until a couple weeks ago. At least 5 times in the last 2 weeks I have woken up during the night and stayed awake for a while. Sometimes I have thoughts swirling in my head. Sometimes I feel like I can’t breath with my CPAP on. Sometimes I’m in pain. But always, I’m awake. Too awake.

This morning, not for the first time, I saw dawn break. I’m not a morning person, and I have only ever voluntarily seen dawn 3 times in my life: once because I knew it would be beautiful to see dawn over the Atlantic ocean where I was staying and so I woke up super early to see it, once on an airplane where the time difference made it easy, and once when some friends and I stayed up all night talking and laughing and watching movies (ah, youth) only to discover as we finally turned out the lights that it was actually getting light outside already. That’s it. The rest of the times have been far from voluntary.

Like this morning.

Last night went something like this:

  • Wake up.
  • Realize something isn’t right.
  • Look at the clock.
  • Look at the readout on my CPAP and realize I only wore the mask for an hour even though I had slept for 3.
  • Put on CPAP mask.
  • Try to shut off the thoughts running through my head. I’m not stressed out, just too awake to stop thinking.
  • Try to sleep.
  • Finally give up on sleep.
  • Go to the bathroom.
  • Drink water.
  • Try to sleep.
  • Can’t sleep.
  • Read a book for a while.
  • See that it’s getting light out.
  • Feel sleepy.
  • Notice that it’s 6am.
  • Debate staying awake for the day at this point.
  • Remember that I have only slept for about 3 hours, and only 1 hour with the CPAP.
  • Put on the mask and go back to sleep.
  • Wake up to a loud noise and feel tired and irritated. Why didn’t I shut off the alarm when I was awake during the night?
  • Snooze the alarm.
  • Sleep for a few more minutes, then give up and stay awake. At least I got to sleep for another 2 hours.

That was bad. Even worse was trying to focus today. I didn’t get out of bed until 10am. I was awake, but dragging. When I got up, the world had started the day without me. People kept texting me. I responded, until I just couldn’t manage it anymore. A friend was trying to figure out where we should meet up the next day, but I couldn’t handle making decisions. It was hard to focus. Wait, did I say that already? Everything was a bit tough to grasp. Everything was exhausting.

A friend suggested I call a doctor, but who? I saw my sleep doctor recently. There’s nothing more to be done. I have a complicated condition that’s hard to treat, and they’re doing the best they can. There’s a medication that could help. One. And it’s in a class of drugs that I’m allergic to. I take supplements that help, but not consistently. Medical marijuana helps, but I don’t want to use that every single night. So I just have to try and stick it out. It sucks.

Now it’s night again, and almost time for bed. Tomorrow night I’m going to a show that I have been looking forward to for months. I have the ticket. I have plans to go with a friend. So please please please I just need to sleep through the night with my CPAP mask on all night long. Please. If I do that, I know I’ll be able to function.

If only I had a choice.


How dare insurance not cover my specialists

March 27, 2018

24 years. If I’m remembering correctly, I have had gastrointestinal problems for 24 years.

First it was ignored. I didn’t think to tell anyone. And I didn’t know that diarrhea wasn’t normal, that not pooping for days at a time wasn’t normal, that nausea and pain weren’t normal. So I suffered in silence.

Then I saw a doctor who wasn’t helpful. I drank prune juice for the constipation and that got me through the worse of it. Sort of.

Another doctor said I had IBS and gave me a prescription.

Years later I went off gluten, then a bunch of other foods. That helped a lot. The episodes that had been coming more frequently backed off. I no longer found myself in the fetal position from gastrointestinal pain 3-5 times a week. Now it was only 1-4 times a month. Only. Hmm.

The problem was, the episodes continued, and my emotional response to them got worse. I found myself thinking more and more often about how I would prefer death. I only thought that way in the middle of the episodes, when I am already in too much pain to seriously consider killing myself anyway, but still, that’s not good.

I never think about death when I have joint pain, even though that pain is much worse. There is something about the nausea that triggers these thoughts now.

Recently I had an episode that was especially bad. I called a friend and neighbor, who came right over. But even his dog, who he kindly brought, wasn’t enough to help me. I sobbed while curled up on the floor, unable to sit up, unable to think clearly, but knowing I needed to not be alone. Eventually the worst of it subsided. But it was enough.

After that, I finally decided to pay the money for the stool test that had been recommended to me. When I saw my doctor the next week, I was shocked to learn that the test was actually covered by insurance! Wow! I took it home, read the instructions, and realized I needed to go off of a couple of my supplements for 2 weeks before I could take the test. So I waited. And waited. And finally it was time, but my joints were acting up and I just didn’t have the mental bandwidth to manage the pain and the test at the same time.

And then, finally, I took the test. For 3 days I scooped poop into a cup. Joy oh joy. But I did it.

It took time for the company to process the test. Then more time for my doctor to get the results, and for the results to be sent to me. But now, finally, months later, I have the results!

And I have no fucking clue what to do with them.

Some aspects of my gut are in balance, others are not. My doctor was honest: there was nothing he could suggest except to take a probiotic (which I already take, but which I had to stop taking for several weeks before the test) and so he wanted me to see someone with more expertise. I appreciate his honesty. That’s why I see him.

There’s just one problem. He recommended 2 different practitioners. And neither are covered by my insurance. At all. Not one penny.

So now I’m considering paying. The one who looks more promising based on her experience is $217 for the first visit and $188 for each followup. I have no idea how many visits I’ll need.

I have the money. And to be honest, if I’m going to spend money, this is a good thing to spend it on. I save as much as I can these days, but really, why am I saving it? To take care of myself. And if I can fix this problem, avoid these episodes from now on, why wouldn’t I do it?

So once again, I am going to pay out of pocket for my healthcare. My insurance is fabulous when it covers my care. But when it doesn’t, I question what is wrong with our system. No one would question that I need help. There is obviously something very wrong. I have limited my diet, tried pills, and followed doctors’ orders. And yet, I still have episodes that have me curled on the floor thinking that death might not be so bad. I need help. And I am so incredibly lucky that I can afford to pay for it.

What if I was one of the ones who couldn’t?


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