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″.

2019-01-27 12.35.47

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.

 

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What is left to eat?

January 15, 2019

Any of you with complicated food restrictions will totally understand. Sometimes it feels like nothing is safe. Like the world is full of food landmines.

Seven years ago I figured out that gluten was a problem for me. Over the next 2 years I figured out a bunch of other foods I had to limit or eliminate. As my leaky gut slowly healed, I was able to bring back some of those foods, while acknowledging that others are gone forever.

For the most part, I don’t mind giving up these foods. I can deal with never eating gluten or corn again. Yes, popcorn used to be one of my favorite snacks. But it’s worth it if it means no longer feeling so sick! So in theory, things were good.

Groceries

Over the years, I have slowly figured out many places where I was getting trace amounts of gluten, and as I eliminated them, I felt better. These were things like sunscreen, moisturizer, lemon juice concentrate, and kissing my then-boyfriend. Some were easier than others to avoid. Let’s be honest, dating gets a lot harder when you have to tell someone at dinner on a second date that you can’t kiss them if they eat gluten – and you don’t even know yet if they were planning to kiss you!

Things were going ok overall until recently. Something is wrong. So far my doctors have thrown around ideas ranging from mitochondrial disease to some sort of yet-unnamed chronic infection to weakened adrenals that aren’t responding to the current treatment. I’m going to see new specialists. But I have also begun to wonder about what I’m putting into my body.

You see, my thyroid med isn’t doing the trick anymore and I want to switch brands, as many patients have recently had to do. The new one is gluten-free, but then just as I was about to get it from the pharmacy it occurred to me that it could have corn in it. It turns out, it does. Hmm. I asked my naturopath what she thought. She said it might be fine at first, but eventually it would probably build up in my body and cause problems. That makes sense. So I’m going to start a compounded medication next week instead.

But then I realized that I hadn’t checked for corn in my current thyroid medication since the manufacturing process was changed last year. And sure enough, it has an ingredient that might have been derived from corn. Yet I still have to take it until the new compounded medication is ready. Every day, I take it knowing that it could be making me sicker, but that I also need it to survive.

Then I looked some more. My vitamin C contains cellulose. So do a few of my other supplements. Huh.

So now I’m wondering if my malaise, fatigue, and brain fog could be from too much corn exposure. I know that small amounts of corn syrup in ketchup, for example, causes a problem for me. So this might be it!

But then just last week I was reminded of the many ways that Celiac Disease symptoms can appear that aren’t necessarily gastrointestinal. And at the same time I learned about some other places where I could be getting trace amounts of gluten exposure that I hadn’t considered before. These are harder to detect, like particles in the air when I’m in the home of someone who has recently baked with wheat flour, or produce in the grocery store that has gluten on it because another customer was touching it. How on Earth can I avoid those? I want a gluten detection service dog (yes, that’s a thing! And they are amazing!) but I am not healthy enough to care for a dog as a pet right now, sadly, much less to train a service dog.

So maybe I will take my new thyroid med and feel better and not worry about this other stuff. Except, even though some symptoms got a lot worse recently, there were issues before, also. So something else is going on. And while I am willing to try a new prescription for adrenal issues and to see the infectious disease specialist, wouldn’t it make the most sense to first eliminate all sources of the foods that I *know* can cause problems for me?

The problem is, I found a list of places where corn can be found, and it’s intimidating. Many of these are common (vinegar) or often found in gluten free foods (xantham gum.) I don’t know how careful I have to be, either. Do I have to avoid honey just in case the bees were fed high glucose corn syrup? If this were a gluten issue I would say yes, but for corn? Am I sensitive enough to need that level of scrutiny?

So now a lot of foods and medications I thought were Celiac-safe might not be and might contain corn that I didn’t know about, produce could be contaminated by other shoppers, gluten might be in the air, and no one knows what’s really safe and what isn’t. Ahhh!

It’s no wonder I’m stressed out about food. It’s no wonder I wish I could just take a safe nutritional supplement and never eat again. Food is a necessity in life, but it feels like a danger, too. Yes, I have to make sure my shampoo is both gluten-free and corn-free and that’s a real pain in the butt to do. Yes, I can’t wear the kinds of lipsticks I like anymore and it totally sucks. Those are emotionally hurtful in different ways. But food is something I can’t ignore. I can say I’ll deal with the lipstick issue another time, but food can’t wait that long. And that – how much I need that thing that has so much potential to hurt me – might just be the most frustrating part of all.

Unfortunately, my insurance will not cover a visit to a nutritionist, and I don’t know how much that would help me anyway. But I would love to hear from others who deal with this. If you have Celiac Disease or corn intolerence, please please please comment below and tell me how you deal with all of this, offer suggestions, or just let me know I’m not alone. It helps so much!


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!


Winning the battle against my fears

December 22, 2018

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

IMG_1709

My last trip overseas: London

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

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

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

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

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

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

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

2018-12-10 11.31.03

Last week I saw the Liberty Bell!

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

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

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

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

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

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

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

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

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

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

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


Will today be the day to go outside?

November 20, 2018

On the one hand, I knew that going out 2 nights in a row might be too much. On the other hand, I thought I might be ready for it. And how would I know if I didn’t try? So I tried. And it could have worked. Could have, but didn’t.

Now, it’s not like I was out clubbing until 2am both nights. The first night I went to play board games, and got home just before 10pm. That would have been fine, except because I was out, I didn’t take my melatonin, and so I felt too awake to sleep. I ended up going to bed at 1am and only sleeping 6 hours. Yikes!

The next day I rested all day, then pushed myself to go out at night. I recently began volunteering for an organization I really care about. I do small things from home and attend meetings once a month. So far, I had only been able to attend by phone, but it was important to me to attend in person. So I went. I was tired, but once I was there I felt good! Still, I hadn’t finished the dinner I brought with me, and the small appetite should have been my warning. I got home before 10pm, but slept badly.

I knew I was pushing my limits. During the meeting I would occasionally cough. Just one little cough every 10 minutes or so, not the kind you get when you have a cold, but the kind that means I’m not breathing well. That’s because my lack of sleep the night before meant I hadn’t used my CPAP enough. After a second night of poor sleep, my sleep apnea was really causing problems. I woke up the next day feeling really blah. Was it my regular autoimmune stuff? Was I coming down with a cold? Was my autoimmune stuff preventing me from fighting off a cold? Only time would tell. I did the smart but boring thing – I stayed home all day to rest. So much for the errands I wanted to run and things I wanted to do around the house.

The next day I clearly had a small cold. Damn. I canceled my date and stayed in. Again. More tv. I wished I was reading a novel instead of an interesting-but-too-much-brain-power-required nonfiction book. I felt sort of queasy after eating, but not in the usual way, or in a really sick way. More in a my-body-is-trying-to-do-too-much way. Weird.

The next day I still had a cold and was still having mixed results with food. Time for more rest!

And each night I was sleeping badly. I was congested from the cold, so I kept having to take off my CPAP mask during the night. You know what’s worse than not sleeping? Sleeping without my CPAP. It’s true. I’d be better off staying awake. Too bad I didn’t. The exhaustion was crushing.

Still, after 3 days at home I was feeling better. The cold seemed to have cleared up much faster than usual. I took a short walk! I washed my hair! I put the pajamas and towels from the last few days in the laundry! I wanted to run errands, but figured I should rest. Instead, I cooked a nice but relatively easy dinner. I was on the mend!

Except after dinner I felt a bit queasy. And by 8:30pm I was falling asleep on the couch. I slept on the couch without my CPAP for half and hour (d’oh!) and then went to bed, where I watched a movie on my phone for an hour and a half. Finally I was able to sleep. And for once, I shut off my phone. The new Android update makes it hard to shut off all sounds, and too often a ding or a ring comes through, so I shut it off completely. Then I slept with my CPAP for over 10 hours! I can’t remember the last time I did that. 9 is a lot, but 10!? Unheard of for me.

I woke up feeling somewhat rested. But still tired. Still run down. I didn’t get out of my pajamas all day. At one point I was going to. I took off my bathrobe. Then decided changing clothes was overrated and went back to watching tv.

In the past 5 days I have crocheted a bunch of stuff, finished the book I was reading, and watched a ton of tv. I haven’t gone grocery shopping, gotten a haircut, brought in my phone to be fixed (there’s a problem with texting that really needs to be addressed), booked an AirBnb for an upcoming trip (I’ll get to that in another post), or done a bunch of other stuff that really needs to be done. I WANT to do all of that, but I just haven’t felt up to it.

And then today I woke up feeling…. normal? Normal-ish? I don’t know, but I definitely feel more like myself. I’m tempted to try going to the grocery store. I really need food. And I especially need the food I promised to make for Thanksgiving.

But I haven’t left the house other than that short walk since Wednesday. Today is Tuesday. And someone is dropping their dog off tonight for several days of dog sitting. She’s a darling and fairly easy, but I’ll need to walk her before bed and again first thing in the morning. I should probably save my energy for that. I want to go outside. I really do. The snow is pretty and the fresh air would be lovely. But on the other hand, I’m still a bit tired, so maybe getting out of pajamas and taking a shower will be enough activity for today.

My friends get a cold and they push through, continuing to care for kids and pets, going to work, running errands. I wish they would stay home so they didn’t spread their germs. I’m the opposite: I got a cold so I stayed in and kept my germs to myself, then had to deal with the autoimmune fallout and was stuck at home for another 3 days – and counting! It’s just one more of the countless frustrations that come with chronic illness.


Wanting to do so much more in a day

November 4, 2018

It’s the constant struggle, isn’t it? Even my healthy friends want to do more than they can in a day. With chronic illness, the struggle is just that much more intensified.

Some days I can’t do anything at all. One day last week all I managed was to change out of my pajamas into a clean set of pajamas around 4pm, to browse Facebook in the morning and to watch tv and movies in the afternoon. Oh, and to eat. That was it.

Other days I do lots. Today I too a walk, went to the gym briefly, answered emails, did a couple random little things at home, wasted too much time online, and did part of my monthly financial review. Not bad! It’s just that I want so badly to do more!

And I never know which days will be which energy levels.

I look at my mother and wish I could keep up with her. She does so much in a day, and I wish I could do the same. I wonder how much I will (or won’t) be able to do when I’m here age?

I see my friends, who manage to do more than me in addition to working full time and raising kids.

It’s not fair to compare. I know that. Of course I know that. But still, it’s hard not to. Because I want to do more! I want to get all of my chores done so that I can do more fun things. I want to do more of the fun things. I’m so tired of doing one fun thing and then being too tired for anything else. I’m trying to make plans with someone this week, and I feel that I can’t see them Wednesday night because I have physical therapy Wednesday afternoon and doing both would be too much. I can’t see them Friday night because I’ve got a meeting Friday afternoon and both would be too much. I want so badly to do 2 things in one day.

So mostly I’m complaining because I’m feeling frustrated today. Because it’s only 3pm and while I’ve done a lot, I want to do more, even as I’m struggling to keep my eyes open. Literally. The sun is shining for the first time all week, and we’re about to get several more days of rain. I want to be outside enjoying it! I want to go out with a friend. I want to clean up my apartment. I want so much but my body has other plans. My body wants to rest. My body isn’t able to do more.

And so I am sitting on the couch, with the laptop on my lap, looking longingly out the window and feeling sorry for myself. It’s not helpful. It’s not productive. But it’s where I’m at. And this blog is called Chronic Rants, after all, so some days I just need to rant a bit.


Taking a day off

October 27, 2018

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

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Days that are not days off:

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

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

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

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

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

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

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

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


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