The freedom of a wheelchair

October 21, 2014

Last weekend I went out of town for a family wedding. As regular followers know, traveling has been tough for me recently. I used to travel *a lot*! I visited family out of state at least 4 long weekends per year (2 of those involved flying.) I spent many

Connecticut trees from a train window

Connecticut trees from a train window

weekends and long weekends and sometimes a week in Maine each year. Then I would take a bigger trip each year, either overseas or to the west coast. If I was in town for 2 months, I’d get antsy. But that was before.

In the last year I have left town only once: to go to a family wedding in NY in July. And I was incredibly sick. My gastrointestinal symptoms were severe and the fatigue was terrible. So you can imagine my surprise when this weekend worked out ok, especially since it almost didn’t happen!

Last week I was in horrible pain. My toes were swollen and painful. I can’t use a cane or crutches because of the instability and pain in my wrists. Prescription painkillers barely help and the side effects are terrible. Cannabis takes the edge off, but that’s it. And I can’t use it on a train. Walking was difficult and painful on Monday, it was horrible on Tuesday, and it was nearly impossible on Wednesday. That’s when I started to question if I’d be able to go on this trip. I cried as I thought about missing the wedding of someone I care so much about. But how could I go?

I talked through every possible stage of the trip with my mother, a friend, and myself. All three of us came to the same conclusions. I needed the pain to improve. The train left Friday morning, the wedding was Saturday night. The dew point was set to drop on Friday, which meant I should feel better on Saturday or Sunday, but would that be enough? How would I navigate the train station? How would I even get there?

Thursday came and went, with pain similar to Wednesday’s pain. Thursday night my boyfriend broke up with me. It was not a good day. A neighbor took out my trash for me, since I couldn’t even make it to the basement where the trash bins are kept. I hobbled around my apartment packing. I rested. I hobbled and packed some more. I cried on the phone to my friends about possibly missing the wedding and about the breakup. I ordered a cab just in case I went, since I knew I couldn’t take the subway to the train station in my condition. I was ready for the trip, but would I be going? I oscillated for hours.

Friday morning at 6:30am my alarm went off. I never feel good when I wake up that early, but I ignored those symptoms and focused on the pain. It was still there, but it was better. Was it good enough? I showered. Could I make it? I dressed. It hurt, but not as much. Would it stop me? I packed my CPAP machine and other last-minute items. How bad would it be if the pain got worse again while I was out of town? Halfway through breakfast I finally decided to go.

I hobbled to the street and took a cab to the train station. There, I got a wheelchair and breathed a huge sigh of relief. The red cap took me right to the train and put my suitcase in the overhead rack. When I arrived at my destination, a red cap was waiting with a wheelchair. I was in pain when I arrived, but it wasn’t too bad.

The next day, the pain was worse again. While my family went out and explored a new city none of us had ever visited, I sat in the hotel room. At first, it was relaxing to read a book and rest. But I quickly got stir-crazy. The room didn’t get great light, and I wanted to get out of there. I called the front desk and asked if they had a wheelchair for guests to use, and they did! I called my mother on her cell, and she and my dad came back for me.

A little while later, we were strolling through a farmers market, sitting in a beautiful park, and then enjoying a nice lunch. It wasn’t fancy. It wasn’t the way I would have explored a new city if I was able to walk. It’s not what I would have done 3 years ago. But it felt so good to get out of that hotel room! I was so happy! The wheelchair gave me a kind of freedom I wouldn’t normally have had, even while I lacked the freedom to choose where I went, since I needed my parents to push me.

Thankfully, miraculously, my prediction was pretty accurate. By Saturday night I was up and about at the wedding. I kept most of my standing weight on my other foot and I sat more than I otherwise would have, but I also danced a bit (well, I planted my feet and wiggled my hips, because there’s only so much you can do when you’re in pain.) I walked around and socialized. I enjoyed myself, to my own shock and pleasure.

The next morning I was in pain again, but it wasn’t as bad as in previous days. Again, we borrowed the hotel wheelchair and my parents pushed me a few blocks away to where the entire family was meeting for brunch. We had a wonderful time!

The return trip went well. Again, red caps took me to and from the train in wheelchairs. I took a cab back to my apartment. It was Sunday, and the pain wasn’t too bad, but it was enough that I wasn’t about to wrestle with luggage on the subway. Yesterday, Monday, I woke up with almost no pain. I went out and ran errands. Today I’m fine. The timing sucked, but thankfully it all worked out ok.

But it couldn’t have worked without wheelchairs. I wouldn’t have been able to manage the train stations. And even if I’d made it down there, I would have been miserable and depressed at the wedding after a day of being trapped in a hotel room. I don’t want to need a wheelchair, but I’m so glad to sometimes have the option of using one when I need it!

Do you ever use wheelchairs as an occasional or part-time aide? How do you feel about it?

Yay for food stamps! Well, sort of….

October 14, 2014

Me: “Great news! I got food stamps!”


Me: “Isn’t that great?”

Her: “Um, sure?”

A few years ago I wouldn’t have been excited for food stamps. But things change. They change we have to go with the flow, and the flow leads me to be thrilled about getting food stamps!

My family and friends are trying to be supportive, but they see this as a bad thing. Let’s face it, there’s a certain stigma that goes along with food stamp benefits. My mother immediately said, “You aren’t posting this on Facebook, are you? Because people can be funny about these things.” That was her nice way of saying, “People can be assholes about someone getting the benefits they need.” She didn’t want me to get attacked online. Many friends have been unsure how to react. Except for my friends in my chronic pain support group, that is. Many of them also have financial difficulties due to their health, so they appreciate how much of a difference this can make. But the others just don’t feel right saying “Congratulations!” for this.

Last month I wrote about missing out on thousands of dollars in benefits because I didn’t know to apply for them. I immediately signed up for Section 8 and am now on the very long (3-4 years) waiting list. I applied for fuel assistance and will find out about that in 2 more weeks. And I applied for SNAP, formerly called food stamps. I gathered papers just 2 days after my grandfather’s funeral because I had already applied and the paperwork deadline was fast approaching. I didn’t want to miss out. When I had looked into SNAP a couple years ago, when my finances first took a dive after I realized I wasn’t going to be able to return to my job, I wasn’t eligible. They had an asset limit of $2000. I had saved up more than that when I worked, so I wasn’t eligible.

Last month, when my friend told me about benefits, she mentioned SNAP. I figured it couldn’t hurt to look it up and, low and behold, they’d changed the requirements! My assets no longer counted against me! I could use those assets to pay my rent, and still apply for SNAP because of my low income. What a surprise! I wondered when that change occurred. Could I have applied a year ago? Two years ago? Wondering didn’t help, but applying would, so I filled out the application and went through the process. And then I waited.

After not leaving my apartment for a few days last week due to feeling like crap, I finally went downstairs and checked the mail. And there it was: a letter stating that I’d been approved and was now receiving benefits! I went to the grocery store the next day and used my new card – and it worked! I got a receipt that included my balance. It was all there.

I keep my grocery costs low, thankfully, and this will just about cover my monthly food bills. They back-dated the benefit to 30 days before my application, so I have that money too. I’ll use it to buy things like toilet paper and toothpaste, if those are allowed.

Can I afford all of my expenses now? No. Not even close. I’m still using my savings to pay for quite a bit. But every dollar helps. And I’m incredible thankful for these dollars. So as much as I wish I didn’t need SNAP/food stamps, as much as I wish I didn’t come close to the eligibility requirements, the truth is that I do need it, so I’m thrilled that I have it!

Do you get benefits? How do you feel about it? How to people react when/if you tell them?

Update: Do as it turns out, I can’t use my benefits for toilet paper and toothpaste. But I’m sure I’ll use them on groceries over time.

…and he didn’t run away

October 8, 2014

Usually when I feel especially bad I avoid people, even people who want to help me. Part of it is that I don’t have the energy to deal with being around people. Even talking is too exhausting. Part of it is that I don’t want them to see me in that state. Sometimes it’s unavoidable, and that’s why several people have seen me when I feel especially bad. But I can count that number of people on my fingers. The other night, though, was probably the first time I voluntarily let someone see me that way.

I mentioned last month that I’m seeing someone. And it’s been going well. It’s been a long time since I’ve gotten this far into a relationship. We’d known each other before so he knew I had some health issues, but it was a vague knowledge, acquired from being in the room while I spoke to others about it. But on our first date, I brought it up and answered some questions. Since then, I’ve answered more. I canceled our second date because I felt too exhausted. Our second second date was just hanging out at my place and watching a movie because I didn’t feel up to going out. He was very understanding. We haven’t been seeing each other for very long, and until this week, that was the worst I’d felt.

The other day a lot of stress and activity caught up with me and I had a BAD day. You probably know the kind. It started terrible and then got worse. I was barely getting by. We had a date planned for that night. We were just going to hang out at my place, but I wasn’t doing well. I spent the morning reading, but that became too difficult. I spent the afternoon sitting on the couch watching tv, but that became too much. I spent the evening lying on the couch, alternating between watching tv when I could and just thinking when the tv was too much. I had emailed him to let him know that I might not be up for getting together. He told me that I could let him know at the last minute. He was completely understanding. And for once, I didn’t feel any pressure at all. I knew that if I canceled, he’d understand. This was so unlike most social situations and was a huge relief!

So there I was, lying on the couch, needing to go to the bathroom for about 2 hours but not having the energy to stand up. And I knew exactly what I wanted. So at the last minute we spoke on the phone and I told him the truth: I wanted to see him, but I wasn’t sure he should see me this way. He asked, “Is this the last time you’re going to feel like this?” and I fought my natural instinct to be vague and simply said, “No.” He responded, “If this is going to work, I have to be able to see you like this.” I was floored. He was right, of course, but still…. I pointed out that since this would happen again, he could see me like this another time, maybe in a month or two when we knew each other better, but he insisted there was no time like the present to see me going through this. And he came over.

It was a bad night. I rallied for a bit around the time he arrived, but that didn’t last long. For a little while I was able to sit up while we talked. We cuddled. He held my hand, which was all I really wanted. He asked about how I was feeling and what caused it and things like that. I explained the best I could. It was hard to collect my thoughts, and he kept having to wait while I tried to form sentences. The brain fog was thick that night. We talked about other things, too. It was a good distraction. Most of the time I had to lie down. I wasn’t just fatigued, but weak. So weak. Most of the time my eyes were closed. Keeping my eyes open was too hard. Processing visual stimuli was too exhausting. So I lay there with my eyes closed and we talked. He offered to help me with household stuff, but I told him that all I wanted was for him to be there with me and hold my hand. And it was true.

It was hard for him. I could see it in his eyes, in his face, felt it in the tenseness of his muscles. I kept checking in with him, asking him how he was doing. He just kept saying he didn’t like to see me in pain. I couldn’t tell if there was more to it than that or not. But it was hard for him, I knew that much. It was especially hard when, in the middle of a sentence, I stopped talking, had trouble breathing, and grabbed my abdomen. The pain was intense. In an instant it had jumped from a 3 to a 7 on my pain scale. It came on suddenly, or so it seemed. My guess is that there were warning symptoms that I’d ignored because of the fatigue. I wasn’t able to look at him during that, so I couldn’t see his face, but I’m guessing it was surprising for him. I’d mentioned pain, of course, but he hadn’t seen it have any effect on me. Not until that moment.

He stayed with me until that pain passed and I said I wanted to go to sleep. Then he left.

He didn’t handle it all perfectly, but I doubt anyone would their first time out. He told some stories that were probably meant as a way to make light of pain and discomfort, but just sounded like he was trivializing it. He didn’t hold my hand enough. I would have loved for him to stay until I was in bed. He wasn’t perfect, but he was pretty damn close. And he seemed to handle it all ok. Still, I was nervous.

I woke up feeling significantly better. My thyroid was still swollen, my adrenals were still struggling. I was fatigued, but not weak. I ate something for the first time in 22 hours. I emailed him to let him know I was doing better, and he wrote right back. He’s a good man, a strong man, and I was almost certain he’d stick around, but of course there was that little niggling doubt. There were the voices of all of those who’d had negative experiences of this type. So I held my breath and waited, and then there it was: he casually brought up our plans for Friday night. As if it was no big deal. As if it was assumed we’d keep those plans. And I guess it was. But what a relief.

So we’ll be going out on Friday. I’m doing better each day, and I think that by Friday I’ll be able to keep our plans to go out. But I know that if I need to stay in, he’ll be ok with that too. Actually, I think he prefers to stay in. I’m the one who’d rather go out! I’m looking forward to showing him that I’m back to the way I was when he saw me last week, before that terrible night. And I want to talk to him about everything, to answer his questions, to take his temperature on this. We all have baggage. I know that. He certainly has his, too. It’s just that mine is very visible and very hard to ignore, and he had to face it early on.

Still, it’s hard not to notice that we have a date for Friday night. So far, he hasn’t run away.

What did you do today?

September 30, 2014

To the uninitiated, it sounds like such a simple question: “What did you do today?” And really, it is simple. It’s the answer that’s complicated.

Some days the answer is complicated because the day was spent dealing with symptoms, but other days the complication comes from a reality that is so different from that of my peers. That’s how it was one day last week.

I’ve started dating someone, and I’m trying a new approach: honesty. Ok, filtered honesty, but I’m trying not to filter too much. The filter is limited to certain symptoms. There’s no need to mention pooping my pants at this stage of the relationship, for example. I’m trying to share everything else. But that gets complicated.

I asked “What did you do yesterday?” in an email this morning and he responded by telling me about getting together with some friends after work. Yeah, that’s what my answers used to look like, too. Not now.

When he asked me last week, I answered honestly: I bought groceries, did some medical research, pulled together paperwork for my food stamps application, and washed a bunch of dishes. I did a few other niggly things, but those were the main ones. Groceries and dishes are familiar to most of us, but medical research and food stamps? Um, not so much. He was surprised when I mentioned the food stamp paperwork (actually, it’s called SNAP now, but whatever.) But when he thought about it, of course he realized that if I don’t have much income coming in, then of course I qualify for and need food stamps. As for the medical research, he has no idea how much time I spend on that. I tried to explain a little bit. He loves that I’ve taken matters into my own hands by doing my own research. He just doesn’t understand how hard it is. He doesn’t know about brain fog. I’ve tried to explain it, but he hasn’t witnessed it (it hasn’t been too bad since we started dating, and I usually hide it well.) Besides, you can’t really understand brain fog unless you experience it yourself. He doesn’t see how exhausting reading can be. He doesn’t know that I don’t just read an occasionally newspaper article – I follow blogs and Facebook groups, I read news articles and web sites. I read entire books from the library. I spend so many hours on this, it would shock him. He’ll learn in time, I’m sure.

And that was just that one day. He hasn’t asked about today yet, but it’s a similar mix: I cooked (ok, I threw ingredients in the crockpot, but it counts, right?) I rescheduled two doctor appointments, I’m writing on this blog that he doesn’t know about yet, I prepared paperwork for my fuel assistance meeting tomorrow, I prepared paperwork for my medical appointment tomorrow, I looked up the best routes to get between the two appointments (I can’t remember the last time I had two appointments in one day!), I pulled my winter clothes out of the closet and packed away my summer clothes, and I rested. I rested a lot. Because all of that was exhausting! I still have so much more to do, but I know it won’t get done. If I can muster the energy, I’ll do my physical therapy exercises tonight. I have done them in a while – not since before my grandfather died. I need to try. Maybe in a few days I’ll find the energy to finish going through my clothes. Right now, my suitcase and duffle bags are are open on my bedroom floor with clothes spilling out of them. My drawers are too full. I have sweaters on top of the dresser because I haven’t found a place to keep them yet. I have pants on the bed that I need to try on. What I don’t have is the energy to deal with any of that.

And yesterday? Yesterday I straightened up my apartment just a bit, did a bunch of dishes, went to a doctor appointment, bought a new winter coat (yay!), and then came home and collapsed in exhaustion. Somewhere in there I also managed to write a blog post about the suckiness of this month and probably do a couple of other things that I have since forgotten about as those memories have been lost in the fogginess of my brain.

And those are just three sample days. Sure, some days I deal with less health-related stuff. But other days I deal with so much more. Friends are surprised when I mention yet another doctor appointment, picking up more meds, or any of the other random acts that I no longer consider unusual. Actually, what surprises them is not that I do these things – after all, they know about my health problems – but my nonchalance. They can’t understand my attitude when I mention getting bloodwork in the same way that someone else would mention picking up milk at the store. But that’s just it. For me, they are the same. Medical care is more than just routine. It’s like breathing.

No, wait, I was wrong. They are different.

I can’t drink milk.

Now it’s your turn. What did you do today? Or on some other typical day? And how to friends react when you mention it?

September kicked my ass

September 29, 2014

Here’s the thing about chronic illness: it’s unpredictable.

And here’s the thing about life: it too is unpredictable.

And sometimes the unpredictable chronic illness shit coincides with the unpredictable life shit.

That’s what happened to me. That’s why this blog has been so quiet lately. And that’s why September kicked my ass.

It started with my typical CI issues flaring up. Then I had a surprise when I had an unusually large amount of blood drawn and I got light-headed and started to black out. Bad pain made everything a bit worse. The fatigue was really horrible. A sleep study stressed me out. I had to chase doctors more than usual. I had insurance-related financial worries. I had a looming deadline to send in the paperwork for my SNAP (formerly food stamps) application. And then, just when I was completely overwhelmed, a loved one died. I was devastated. I was stressed out. I was running around trying to be with family, attend the funeral, sit shiva, and help clear out his apartment. As you can imagine, my stress, fatigue, pain, and nausea all got even worse.

Now, September wasn’t all bad. I started dating someone and things are going really well. I’m processing my grief. The sleep study went well. The symptoms have been improving. Still, it wasn’t my favorite time. I mean, I wasn’t even blogging regularly! That tells you just how badly the month had gone!

October is just a couple days away, and I’m hopeful that it will be a better month. I’m starting a new sleep apnea treatment, I’ll continue dating the guy, I hope to find time to cook, and the transition to autumn that was probably responsible for a lot of my September symptoms will be complete. It won’t be perfect, but surly it must be better?

The thing about chronic illness is that, like life, there are ups and there are downs. September gave me more than my share of downs. Now I’m really hoping for some ups! So screw you, September! I’m moving on, to bigger and better things!

Health insurance should cover a bidet for anyone with a GI illness

September 21, 2014

Sometimes things get messy… down there. It happens. And when you have diarrhea on a regular basis, including explosive diarrhea, maybe it happens a bit more than healthy folks might expect.

As recent readers know, the last few weeks have been especially difficult for me. Still, I’ve been pushing through. I was doing ok, but the last few days have been incredibly rough.

And so I wasn’t feeling great this morning as I read my Facebook feed and slowly ate my breakfast. The stress was getting to me. I’d barely the last 3 nights. I was pretty sure I was all cried out…. at least until the funeral tomorrow. Who knows what that would bring. And how would I make it through the day? The funeral, sitting shiva, the long drives…. would I make it? I tried not to worry about getting over to be with the family again today, figuring I could rest all morning and afternoon and head over much later. I wouldn’t even get dressed, just stay in my pajamas until 3pm. I tried not to think about it. I tried not to think about how my grandfather looked when I visited him on his deathbed less than 48 hours ago. I tried not to think about the hell that my mother and her siblings were going through. I tried to remember the good times. And there were so many good times. I am endlessly thankful for that.

I sat there feeling pretty good emotionally, all things considered. I was hanging in there physically. I was doing ok. I was going to make it. And then instead of feeling gas released by a fart, I felt poop. Yes, I was pooping my pants. This has happened a couple of times before, but with all of my recent improvements GI-wise, I thought it wouldn’t happen again. But it did.

I bolted from the chair and ran for the bathroom. I took just a couple steps and realized the room was fuzzy. One part of my brain knew the problem, and of its own accord my hand reached up, pulled off my reading glasses, and threw them down. I never broke stride. I made it to the bathroom. Most of it ended up in the toilet. It was just liquid. I felt weaker than before, but I managed to wash out my favorite underwear (how unfortunate!) and my favorite fleece pants (just as unfortunate!) but my ass still wasn’t entirely clean. Things had gotten messy, and thanks to my joint problems in my hands, wrists, and shoulders, it was hard to clean up. Worse than what I usually have trouble cleaning up. So I got in the shower.

I stood in that shower for a long, long time. I hadn’t wanted to shower so early, or maybe even at all today. Showering takes so much energy, and that wasn’t energy that I had to spare. But what were my options? So I stood in that shower and thought, not for the first time, about how much I wish I had a bidet. I used one once when I was in Europe and I liked it. I’m pretty sure if I had one now, I’d be using it often. There are so many days when it would help, but few as bad as today.

We don’t talk about this kind of thing often. But a few weeks ago I was talking to a friend who also has GI problems and we talked about those uncertain farts, and how we can never be sure if they’ll really be farts, or if we’ll end up pooping our pants. I was relieved to hear I wasn’t the only one dealing with that, but sad for her that she has the same problem. And why shouldn’t we discuss it? Yesterday, after hearing about my grandfather’s death, I stood in the shower and cried – sobbed, actually – for ages. I felt my nose start to bleed, but I only stopped crying when I felt myself choking on the blood. By the time I got out of the shower I’d forgotten about my bloody nose until I brushed my teeth. I looked in the mirror and saw the blood dripping down. And I feel like I can talk about that, so why not talk about gastrointestinal problems?

So I’m throwing it out there right now, so all of my fellow CI-ers can remember that if you have similar problems, or maybe something entirely different that you find embarrassing, you’re not alone. We all have our stories. We might not talk about them publicly, but we have them.

And if you’re looking for a safe space to share your own otherwise-embarrassing stories, just post them here in the comments. I won’t judge. (And you can use an anonymous name if you want.) Remember, you’re among friends. And at least a few of them have pooped their pants.

Wishing my health insurance covered the other things that help the pain

September 16, 2014

What my doctors say will help me (and I agree): massage, acupuncture, medical marijuana, physical therapy.

What my health insurance covers: opioids and other painkillers, physical therapy.

Does anyone else see a problem here?

I was thinking about this today during my massage. Technically, I can’t really afford it, but I’ve been trying to get at least two a year, using birthday and Chanukah money from my parents. I should put that money towards other things, like rent, but it just helps the pain so much!

My doctor wants me to get a massage at least once a month. My physical therapist wants me to get massages even more often than that. They each brought up the subject, not me. I never suggested it. But my insurance doesn’t cover it. So I pay $70 for an hour-long therapeutic massage, and I feel grateful that I can get that “cheap” rate. The massage therapist comes to my physical therapist’s office a few times a week and books up far in advance. She actually just added more hours to accommodate the growing demand. Yes, she plays the soft music and dims the lights. But she also keeps a detailed chart, applies the hard pressure I like, and manages to work out some of my always-present knots. She’s wonderful.

During today’s massage I thought about how frustrating it is that my insurance doesn’t pay for something that helps my pain so much. And then I dreamed about winning the lottery and hiring this woman to come to my home to give me a massage every week - oh, what heaven that would be! But back in the real world it just doesn’t work that way. And I know I’m incredibly fortunate to be able to get any massages at all. So many people can’t.

Still, how nice would it be if my so-called “health insurance” covered things that actually improved my health and my quality of life?!

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