Yes, it’s a choice

June 11, 2019

One thing my therapist is helping me realize is that many of the things I do for my health are actually choices on my part. I often feel trapped, like I have no options, but that’s actually not true.

Take the party I went to recently. I put on my sexy new dress: tight, red, showing cleavage, and making me look hot. This is the sexiest dress I’ve owned, and I didn’t want to ruin the effect by wearing my big, bulky knee braces. So I made a choice: I didn’t wear them.

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The dress I wore with the knee braces I didn’t

I wear those knee braces every time I leave the house, but since I knew I wouldn’t be doing much walking, what if this time I didn’t? What’s the worst that would happen?

Well, long term I could do permanent damage by wearing away cartilage, but that wouldn’t be an issue for one evening. I would be in pain, but maybe that would be ok? I know the pain, and it would be manageable. I should still be able to drive home, which is the deal-breaker for me.

So I did it. I brought the braces with me, just in case, but I left them in the car. I wore cute sandals with my orthodics in them. The dress calls for heels, but I knew that level of pain wouldn’t be worthwhile. I’m better off in sneakers, but really didn’t want to do that. I wanted to look good, damn it!

I was in a lot of pain for the first part of the party. Eventually, though, I found a good balance between sitting and standing. It meant sometimes sitting when I would rather stand, but that happens a lot even when I wear the knee braces.

But it also meant that I felt good about the way I looked. I kept forgetting that I was “passing” as healthy, so when I asked a guy out on a date and he said yes, he didn’t know about my health issues. When I showed up to our date in a cute dress and knee braces, I had to explain. I wasn’t doing it to pass, though. I wasn’t trying to hide my health problems. No, I was simply trying to look good in my new dress. And what’s so bad about that?

It is a privilege that I was able to make that choice. I know that some day I might not be able to. But somewhere in the midst of everything, I realized something important: I wasn’t simply choosing to not wear my knee braces. I was choosing to boost my emotional health at the cost of my physical health. That was the true choice that I made.

Within two days my knee pain levels had returned to normal, but the memory of how I felt all dressed up has stayed with me. It’s spring now, and even though I wear skirts and dresses almost every day, I will be wearing my knee braces whenever I go out. That, too, is a choice that I am making. The thing I have to remember, though, is that it is a choice. I am choosing whether or not to do the thing that is best for my physical health. And occasionally, it best not to do that thing, and to give my mental health a boost instead.

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Choosing convenience

May 20, 2019

Let’s face it, dealing with chronic illness takes a lot of time and effort. There are the myriad medical appointments, tests, and treatments. There’s handling the day-to-day symptoms. The flares just add to it all. And that’s on top of having fewer “good” hours in a day than most people. It’s exhausting and overwhelming at times.

That’s why, after many years, I have finally decided to choose convenient options without guilt whenever I need to. Yes, it’s better for the environment to use reusable containers instead of sandwich baggies, but I’m using the baggies when I need to. I will still use the reusable containers most of the time, but when I can’t fit all of the containers into my cooler to bring with me to the doctor appointment, or when I’m going to be out all day and I need more space in my bag, or when I need to make my bag as light as possible, or when I can’t keep up with the dishes then yes, I’m going to use the plastic baggies and then throw them away, and I won’t feel guilty about it.

Similarly, I should use rags when I’m cleaning. But that’s more to wash, more to deal with. So I will use paper towels at times and I won’t feel guilty about that. When I’m in a bad flare, I will use paper plates and plastic forks without guilt. I will run the air conditioner if that helps me to feel better. I will take extra long showers when that helps me. And I will do all of it without guilt.

I believe that every person on this planet has a responsibility to do what we can to preserve and improve our environment. But I am also aware that we have to accept our limits. And maybe one shouldn’t come at the cost of the other. I have been adhering to this new mindset for several weeks now and it has been freeing, not to mention helpful. Instead of doing what’s “right” or what I “should” do, I choose what makes the most sense at that moment. Sometimes I use the reusable containers, sometimes the sandwich bags and you know what? Either one is ok.

Now I’m wondering what types of things other folks choose for convenience, and I’d love to hear from you. Please share yours below! It would be good to add to my list and to give other readers more ideas, too. So what shortcuts do you take?


What a difference a haircut makes

May 20, 2019

I recently got a somewhat-drastic haircut, and was surprised by just how good it felt.

This wasn’t totally out of the blue. I had thought about cutting my hair super short for a while. I had it short many years ago, but since just before I got really sick I had grown it out, always having it somewhere between chin-length and almost shoulder-length. Recently I wanted to cut it but chickened out. Then a few weeks ago, as I pulled into the parking lot at SuperCuts (an inexpensive chain) it occurred to me that instead of a trim, I could do something different. I sat in the chair and asked the stylist I’d never met before to cut my hair really short. And she did! It came out even shorter than it had been a dozen years ago.

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Instead of my haircut, here’s a photo of an adorable furry dog cuddling with me.

I immediately loved it, but it was as I drove home that I questioned why I was downright ecstatic. I mean, it’s just a haircut, right? But it was more than that.

It was me making a conscious choice to change something about my body in a positive way, with no baggage attached. When was the last time I had done that?

Thanks to my chronic illnesses, I so often feel that I don’t have control of my body. A haircut is a small thing, but it’s still a thing I chose to do. And that feels good.


“Don’t let the hormones make you think that you’re crazy”

April 8, 2019

I’m an over-thinker. I always have been, I just didn’t realize it was possible to be any other way. In more recent years, as I have had a lot more time to think and a lot less ability to do other things, I have found myself thinking things through even more. This can be incredibly useful, and has allowed me to research my health condition, for example. But it can also lead to trouble, like when I worry about what certain things mean.

I read a lot, too. I read books, blogs, news articles, Facebook posts. I read about chronic illness. This reading means that I find useful information, but I also learned about things I would probably be better off not knowing. I often wish I could unlearn things.

One thing I wish I didn’t know what how much sicker and more disabled some people are than me. Obviously I knew this in an abstract sense, but being involved in the chronic illness community makes it a lot more real. I also see the high rates of mental illness among those with physical chronic illnesses. I worry that one day I could develop some of these issues. I could become more disabled, develop new physical chronic illnesses, develop mental illnesses, or all 3. This isn’t something I worry about all day every day, but it comes to mind a fair amount.

Last week I had a horrible bout of anxiety. I was nervous about the upcoming iron infusion, and the closer it got, the worse I felt. By the evening before, I was a complete wreck. I should have used some medical marijuana, but for some reason that didn’t even occur to me until the next day! I did everything else I could think of: I messaged some close friends, told them I was anxious, and asked for distractions. The kid videos, cat video, stories about their lives, etc. were very helpful. I read the questions my therapist had suggested I ask myself to determine if my anxiety is founded. I ate comforting foods while still having to avoid inflammatory foods, thanks to the food reaction a week earlier. The next day I stayed busy as much as possible. I was annoyed but managed not to panic when I got my period, only 3 weeks after the last one. I had a friend come with me to the infusion. But I was still a wreck.

On the way to the infusion, I told my friend who it would work. It’s a very short thing, but they keep patients around for a while afterwards because there’s a not-insignificant chance of a potentially fatal reaction. “No wonder you’re anxious,” she said. As I responded, “Oh, that has nothing to do with it” I realized how strange that was. I wasn’t worried about a horrible reaction. So why was I so anxious? I couldn’t figure it out.

Several days later I went to my therapy appointment and I immediately brought up the extreme anxiety. It was worse than just about any I’d had before – it rivaled how I felt the night before my food surgery several years ago, and that made no sense! We talked it through for a while. Eventually she pointed out that I have been hypothyroid lately, right? Yes. “Hypothyroid can cause anxiety. In fact, any psychiatrist who has a patient with anxiety will test their thyroid function.” (I pointed out this unfortunately isn’t the case and she said, “If they’re any good, they’ll do it.” Boy do I like her!) Then she pointed out I had unexpectedly gotten my period that morning, and I usually get more emotional a day or two beforehand. Of course, I hadn’t connected the two because I hadn’t known my period was coming. And then she said it:

“I know you worry about developing mental health problems, but don’t let the hormones make you think that you’re crazy.”

And I instantly knew she was right. I worry so much about developing anxiety (yeah, I know, totally counterproductive, right?) or depression but so often, the worst of my anxiety, depression, or other similar feelings are related to my hormones. When I was feeling down last fall it turned out to be a problem with my thyroid medication. When I suddenly feel like crying for no reason at all, it’s always my hormones. At that moment, that was exactly what I needed to hear.

So yes, in this case I would have felt anxious anyway, no doubt about that at all. Medical procedures worry me for a lot of legitimate reasons, and the last time I got iron infusions it didn’t go well, but I wouldn’t have typically felt this anxious by any means. On a scale of 1-10 I would have normally been a 5, not the 8+ I had been experiencing.

I immediately felt better. It was the hormones. That’s all. I have no doubt about that now that I have had some time to think about it (and my period has ended.) It was horrible timing, but there you go.

Could I one day develop horrible anxiety or depression or something else that has nothing to do with a hormone imbalance? Absolutely. Anyone could, but also, my paternal grandmother, father, and sister all had/have depression; my mother and several of her first degree relatives have anxiety. But that also doesn’t mean that every instance I experience is the sign of something chronic. It could just mean that my hormones are temporarily messed up.

Let’s face it, odds are good that I will eventually develop a new chronic illness. It could be physical or mental, and either way, I will have to deal with it. I worry about both, because I feel like I can’t handle anything else, yet I have felt that way before and have somehow managed to handle each new thing. For now, though, all I can do is keep trying to deal with my current health problems the best that I can, while attempting to not worry too much about what may or may not come in the future. And reminding myself that when I find myself feeling overly-emotional, it’s probably due to my hormones.


Getting taller thanks to physical therapy

January 27, 2019

There are so many topics I want to write about but they’re negative (I mean, the name of the site is Chronic Rants, after all), and I really need to focus on something positive today. So let’s talk about a surprising benefit of my physical therapy.

When I was a kid, my hands and feet were bigger than my mom’s, so we figured I’d be taller than her 5’2″. When I was diagnosed with scoliosis, x-rays were done to see how much more I would grow. The doctors predicted I would be around 5’3″. But as I grew, my scoliosis got worse and compressed my torso. In the end, I was only 5’1″.

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Now, being short isn’t the end of the world, but let’s face it, it can be super inconvenient. In fact, a lot of my neck pain comes from being short. Reaching up to get things off of high shelves, reaching forward for the steering wheel, sitting awkwardly in chairs because I can’t lean back and have my feet on the floor at the same time, and so much more can cause problems. I have even developed arthritis affecting the big toes in each foot as well as the start of bone spurs in those toes. My doctor told me to stop standing on my toes. Easier said than done! I stand on my toes to reach shelves in my apartment, to get things off of shelves in stores, and even to sit on a toilet (ok, I’m not standing on my toes, but they’re still at that angle, because I’m too short for my feet to be flat on the floor.)

And never mind my inability to find anyone in a crowd or see over the person who sits in front of me in a theater.

I go to a lot of doctor appointments (no surprise there!) and they often weigh me and measure my height. I range between 5’1″ in the morning and 5′ 0.5″ later in the day. I can be a little taller as I go about my day thanks to an extra inch or so from my sneakers or winter boots. Unfortunately, due to toes issues I can’t wear heels any more. It’s not like I wore them every day, and I didn’t wear super high heels, but once upon a time I would occasionally wear heels to work and enjoy being 5’3″. I would often wear heel to parties so that I wouldn’t have to crane my neck as much when I stood around talking to people. Taller folks laugh at that, but it really helps. But now, no more heels for me. For the rest of my life.

So I’m short. I don’t love it, but I’ve accepted it. It’s not like I have a choice. I’m not looking forward to shrinking as I get older, and I hope to minimize that with my physical therapy, but even so, with my scoliosis, I know it will happen.

So imagine my surprise when I went to a doctor appointment right after physical therapy and they measured me at 5′ 1.5″! I was thrilled. I know PT helps with my pain and discomfort. That’s been obvious from the start. And my current physical therapist is the best I’ve had. I travel way out of my way to see her. In the past, PT was 6-12 weeks, then sending me home to continue on my own. When my problems recurred, I was blamed for not consistently doing my exercises. But let’s be real here: sometimes they won’t happen. If I have a week where I feel like shit, where I’m too fatigued or in tons of pain or have a super heavy period, then I won’t do those exercises. And then when I resume them after a week or two, damage has already been done and I won’t be able to get myself back to where I was at before the short break. That’s not my fault, it’s just how my body is.

My current PT is different. She sees me every 1-3 weeks all year long. We space things out in a way to get insurance coverage throughout the year, meaning we make a lot of adjustments in the autumn based on how many visits I have left. This means I maintain a certain baseline that works well. If I come in with a complaint, she focuses on that, like this week when I had a lot of neck pain. If I come in without any particular pain, she focuses on general posture, loosening muscles, and straightening my spine.

And it must be working. For the first time in many years I have a lot less pain on a consistent basis. When I first started seeing her, I would come in with a lot of pain to every session. If I didn’t see her for 3 weeks I was in agony. Now, 3 weeks is usually doable. I recently had to stop seeing her for 6 weeks due to some family issues she was dealing with. By the end I had some pain, but it wasn’t too bad. I was amazed!

Obviously PT was working well for me, but getting that height measurement just put a number on it. She was pleased when I told her. But then something more surprising happened. A few weeks later I saw a different doctor and they measured me. This time I wasn’t coming directly from physical therapy. In fact, my last PT appointment had been 3 days prior. But when they measured me, I was 5′ 1.5″ again! I was floored.

I don’t know if this will last. I don’t know if it will even happen again. All I know is that for once, I have concrete, numerical proof that something I am doing is actually working. I’ll take it!

Now excuse me, because it’s time for me to do my physical therapy exercises.

 


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.


Traveling on Amtrak with a disability

December 29, 2018

Travel is often tricky when you have a disability. Maybe you can’t lift your suitcase into the overhead bin on an airplane or you need to make frequent stops on a car trip. Whatever the issue, there are a lot of unknowns. So I thought I would tell you about my experiences on Amtrak recently. Obviously these are only my own experiences, and I’m sure it will be different for everyone. Still, I learned a lot.

I mentioned in last week’s post that I recently took my first week-long trip since I got really sick about 8 years ago. That was a big deal! So as you can imagine, I was very nervous. I am thrilled to say that it went very well, and you can (and should!) read all about it. The first thing I did was get on a train to Philadelphia, and I’m happy to say that despite my nerves, that went very well, too. So here’s my experience, mostly good, with a few bumps.

2018-12-15 Leaving NY

My view as I left New York

The first thing that happened, of course, is that I made reservations. I spent a while considering my options. I didn’t have a lot of flexibility on the dates. I looked at all of the trains. Some were high speed and some weren’t. Some business class tickets were almost as cheap as coach tickets. But timing was important. I didn’t want to go too early, since I knew I would need a lot of time to get ready without stressing out too much, and I didn’t want to arrive too late. I noticed in poking around on the web site that I could enter that I had a disability and I would get a reduced price fare! I was definitely taking price into account, so that made a difference. Some fares had huge discounts and some weren’t discounted at all if they were already really cheap tickets. For example, my trip from Philadelphia to New York was $39 without a discount – I wasn’t about to complain about that! You can get info on the discounts here. There’s a list of documentation to prove you are disabled, but I was never asked for anything. I’m guessing that varies. Finally I chose my tickets and tried to book online, but had trouble. So I picked up the phone.

I was able to tell the agent on the phone exactly which tickets I wanted. And when I booked, I was clear that I needed a wheelchair at each station. She asked if I wanted accessible seating with extra leg room. I asked about the price and she said there was no extra charge. Wow! I hadn’t been expecting that. So I said yes, and I’m glad I did. But more on that later.

We made a reservation (which didn’t have to be paid for a few days) and I went on my merry way. Except I was having trouble figuring out how to get to the station in Boston. The last time I traveled by train I lived closer to the city. I posted on Facebook and asked friends how they suggested I get from the suburbs to the train station. Someone suggested that I leave from a different station. I would have to pay for parking, but since my plan had been to leave my car in a friend’s driveway and then take a cab or a Lyft into the city, the cost would be the same. It was perfect!

I called Amtrak to change the tickets. I hadn’t paid yet. The person on the phone pointed out that I had accessible seating on one leg of my trip, but not the other two (I was going Boston –> Philadelphia, Philly –> New York, and NY –> Boston.) The first person had screwed up and I wouldn’t have known until I got on the trains. In fairness, the confirmation had said it clearly, but I didn’t read it closely enough. Lesson learned! The person on the phone cancelled my old tickets in order to book new ones in accessible seats. Once those tickets were cancelled, the new ones popped up at that day’s prices – and ended up costing me $100 extra! I was pissed, because they hadn’t told me. She assured me that when a new ticket opened up at the lower price, I would get it. I was still pissed. I told her that shouldn’t have happened. I was taking the same trains at the same times as before. The accessible seating mistake was the agent’s fault, not mine. She insisted she couldn’t do anything, but that she would get me a lower price. What could I do? I booked another reservation. In the end, she was right. 2 days later I got an email saying I had tickets at the original price. I had worried for nothing. If that hadn’t worked out I would have made a bigger stink about it, because really, it wasn’t my fault they hadn’t given me accessible seating in the first place. Anyway, I paid and then got ready for my trip.

The suburban station I left from was tiny. I got a disabled parking space in the garage (I have a placard) and schlepped my stuff inside. Here’s where I made my first mistake. I went to the agent and got my tickets. He asked if I really needed a wheelchair, since it was a small station. That was an inappropriate question that he should never have asked! And I made the mistake of saying I was fine. The station was tiny and I got to the seating area just fine. But getting my stuff up the ramp to the train platform later, though not far, was too much. I should have asked for luggage assistance, but I didn’t know that was a thing. I asked how I would find accessible seating. He assured me that the conductor would be looking for me and would help me. That part went well. The conductor carried my suitcase onto the train like it weighed nothing and found me an empty accessible seat. The seat next to me was empty, which was nice.

Later, another conductor came by to check tickets. He asked if I really needed the accessible seating and I said yes, and told him I would need a wheelchair in Philly. He didn’t blink. He didn’t ask for proof. He simply told me he wouldn’t be on the train there, but would leave a clear note above my seat (where they place the tickets) for the next conductor, and the wheelchair would be waiting for me.

I read and ate and looked out the window and read some more as the miles passed. At one point an older couple got on the train. I heard the conductor explaining there were no accessible seats remaining on this train and next time they should reserve one. I felt bad, even though I had no reason to. They sat behind me.

More miles passed, and a family came up to me, a man and a woman holding a baby and pushing a stroller. They asked if they could have my seats so they would have room for the stroller. I started to say no, feeling horribly guilty (again, I shouldn’t have! And yet I did. Go figure.) Then the conductor (the same one who checked my ticket) came over and told them that I had reserved the accessible seating and they needed to leave the stroller in the luggage area up front and go find other seats. I was relieved and also impressed. I was also glad he happened to be in my car at the time. Later, he stopped by my seat to ask if I was doing ok, then said, “Can you believe some people? I can’t believe they would ask you to move out of accessible seating!” I appreciated his support and helpfulness. He had the perfect attitude. He was right! In their defense, the seats weren’t clearly labeled as been accessible seating. And of course, I don’t look disabled. Still.

Many times during the trip I brought my suitcase from that big empty area in front of me (big enough for a wheelchair) and put it a bit in front of my seat and propped up my legs on it. That made a huge difference for my knees and hips. Otherwise, I don’t know how I would have managed. Thank goodness I had the accessible seat! I also made sure to get up several time to walk a bit – that’s much easier on a train than on a plane, though there’s still swaying. I leaned against the luggage storage above the seats as I stretched, bringing my legs into the big open wheelchair space. It helped a lot, I think.

In New York we had a 15 minute scheduled wait. I walked around a bit on the train. The conductor told the couple behind me to wait, that he would get the wheelchair that hadn’t arrived yet. He assured them the train wouldn’t leave until he gave the word, and he wouldn’t do that until they had the wheelchair. I chatted with them while they waited and we had a nice time. The wheelchair came and they left. We were getting close!

Somewhere between NY and Philly I got tired and wasn’t feeling as well. At Philly, the conductor told me to wait in my seat for the wheelchair. It was only a minute before the wheelchair arrived. He helped me with my luggage. The red cap worker pushed the wheelchair with one hand and pulled my suitcase with the other. I told him I needed a cab so he brought me right to the cab area, to the ramp in the curb. He had the guy directing cabs send one up to the ramp. He put my suitcase in the trunk and asked if I needed help getting into the seat. I was VERY impressed.

The first leg went smoothly! What a relief!

Several days later it was time to go home. I found a red cap at the train station in Philly and told him I would need a wheelchair. They were all being used, but he assured me he would find one and would come get me when it was time. I was very early, so I read a book. But as the time came for my train, I got nervous. I got up and looked for the red cap, saying my train would leave in 5 minutes. And there were no wheelchairs. He assured me were fine. He pointed to a long line of people and said they were waiting for my same train, that it hadn’t arrived yet. Ok. I relaxed. But a minute later he was there with a wheelchair and he brought me and my luggage down to the platform.

This time there was someone next to me on the train, but I had accessible seating. It was only and hour and a half so I felt the seat wasn’t necessary, but I booked it to keep all of the tickets the same. And then part way through the trip my knee started to lock up and I became very grateful for the extra leg room! I propped my leg on my suitcase again and it made a huge difference! Another lesson learned – even for a shorter trip, I need that space.

And once again, the conductors and red caps handled my suitcase and assured me I would have a wheelchair in NY. Great!

Sure enough, in New York the wheelchair was waiting when we arrived. I told him I needed the subway and he not only brought me to the area, but pushed me to the ticket area so I could buy a ticket, and asked the person at the turnstiles where the elevator was. He made sure I had everything I needed, since he wasn’t allowed through the turnstiles. The elevator was right there, so I got down the platform easily. Again, everyone was friendly and helpful.

A couple days later, it was time to head home. This was the one part that didn’t go well. First, I had to walk through Penn Station to get to the Amtrak area. The station in the Boston suburbs is tiny. The station in Philly is big, but the Amtrak area is near the entrance. Penn Station is huge. I followed signs and didn’t get lost, but it was a long walk and I was in a lot of pain when I got there. I showed my ticket to get into the Amtrak waiting area and immediately found 2 empty seats, dropped my things in one, and plopped into the other. I had an hour before my train. I rested and ate part of my lunch. Then I finally went to the red caps and asked about getting a wheelchair. They told me they would find me. I went back to my seat and ate more and read my book.

A bit before my train, a red cap came over and checked in. He told me he just wanted to make sure he knew where I was sitting. That was reassuring. A few minutes later he came back with the wheelchair and a dolly carrying another suitcase. He added my suitcase. He was walking fast to the elevator with another passenger behind him. He asked if he was walking too fast. She said something about a problem with her foot making it hard to walk. He slowed down a bit.

We got to the elevator. People got off and the doors started to close. He opened them and got our luggage on, then came back to put on my wheelchair but the doors closed first! He swore and ran down the stairs, leaving the other passenger and me feeling bewildered. Another red cap walking by commented that he could have pulled the red emergency button to keep the doors open. When the doors opened again the elevator was…. empty! I expected to see the red cap with our luggage, but it was totally empty! The other passenger and I looked at each other and didn’t know what to do. The red cap came running back up the stairs and was upset to see the elevator closed. He berated the other passenger for not holding it open, while I asked about our luggage and said he’d taken it off the elevator and left it on the platform. Yikes! Now I didn’t know if our luggage was safe, and he had the nerve to get mad at this poor woman, even though he was the one to screw up. Why didn’t he just come back up with the elevator? Worst of all, he was muttering that now we might miss the train. WHAT!?!?

When the elevator came, this time he pulled the red emergency button. When we got down the platform he retrieved our luggage and took off practically at a run to get us on the train before it left. I was ok in the wheelchair, but I worried about the poor woman who was having trouble walking. She needed to get to the back of the train for the quiet car. The red cap put me and my luggage in the first car, then ran off. I only hope he put that poor woman in the wheelchair to get her to the back of the train!

That was a horrible experience, which is a shame, because everything else had gone really well. The train ride home was easy. I had the seat next to me empty again, and in fact most of the car was empty on a Saturday afternoon. I stretched and walked around as needed, and propped up my legs when I needed to. The conductor knew I needed a wheelchair, but I told him I might not, and I would know as we got closer. He checked in as we got closer to home and I told him I didn’t need a wheelchair, just help with my luggage. It was that tiny station again, and I knew I needed to stretch my legs after the trip and before my drive home, so I thought it would be a good idea to walk a little bit. The red cap was waiting for me at the station. He loaded my bags onto a luggage cart and we headed inside. I asked where I would pay for my parking and he said either at the nearby desk or when I left the garage. I asked if he minded waiting while I paid at the desk and he said not at all. We had a pleasant chat as we walked to my car. He even put my suitcase into the trunk, which I hadn’t expected!

As I drove home, I thought about how easy my return had been. In fact, the train travel in general had gone well. Except for that horrible time in New York’s Penn Station on the way home, everything with Amtrak had been fantastic. I can’t believe they give discounts for disabled passengers, free accessible seats (as long as they aren’t all booked,) and help with luggage whether or not someone needs a wheelchair. They might offer other services as well, but these were the only ones I needed.

So that’s my experience. Obviously, your mileage may vary, but I hope your travels go as well as mine did. In fact, they went well enough that I hope to take the train to New York again in a few months!


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