Panic, thyroid, and medications

January 24, 2019

The thing about thyroid hormones is that they are needed for every part of the body to function. When you look at the list of hundreds of hypothyroid symptoms, you can see exactly what I mean. We need thyroid hormones.

It took too long for my hypothyroidism to be diagnosed. I am certain that the years-long delay in diagnosis and treatment led to some of the long-term damage to my body. Eventually I was diagnosed and put on medication.

Nine years later I did my own research and realized a lot of my ongoing health issues were untreated thyroid symptoms. I switched to a different class of medications altogether called Natural Dessicated Thyroid (NDT.) Instead of synthetic, human-made hormones, I was no taking pills formed from pig thyroid. You see, pigs produce the same thyroid hormones as humans, and in similar proportions. Many hypothyroid patients see huge improvement on these medications. Eventually I even got my father to switch to NDT and he also found improvement.

Things went well until several months ago. After years on Nature-throid I was suddenly hypothyroid again. What the hell?! I read on a hypothyroid blog that a lot of Nature-throid patients had seen a resurgence of symptoms since they changed their manufacturing process last year. At the time they swore they weren’t making any changes other than switching to a bigger facility. We’re now learning that there were changes to the ingredients after all, and that these were having unintended consequences for many patients.

I spoke to my doctor, who gladly wrote me a prescription for another NDT called NP Thyroid. But when I called the company that makes NP Thyroid I learned that it contains cornstarch. I react badly to corn. This would be a tiny amount but even so, I would eventually have issues with it. So we turned to compound medications.

The compound pharmacy is horrible. I won’t detail the issues now, but they suck at filling a prescription. I should have had this prescription last week but they keep having delays. My old Nature-throid prescription may not work well but it’s better than nothing so I figured I better get a refill, since the new compound wouldn’t be ready before I ran out of medication.

And then I got the call: Nature-throid is back-ordered until March. They don’t know why. No one has it. I asked around and learned more. The raw ingredients are back-ordered so it’s not just Nature-throid but all NDT medications! I even called a different compounding pharmacy and they said they can’t get their hands on it either.

SHIT!!!

So now I’m panicking, because I need my thyroid medication! And remember how I said thyroid hormones effect all parts of the body? Well, they affect mood, too. I have been more emotional lately due to being in a hypothyroid state. So while the issues with the compounding pharmacy are rightly upsetting me, I am getting even more upset than I usually would. I don’t have the capacity to properly react to things right now. This means I’m extra stressed out.

And ironically, the thing that is currently causing me the most stress is my inability to get my hands on the medication that would fix the problem that is causing me to be so emotional.

There aren’t a lot of options here, and things could get very bad. If I can’t get more NDT (I’m cleaning out every pharmacy that I can right now) then I will have to go back to synthetic medications. But those probably contain corn in the fillers and might not even be gluten-free. Not to mention, they simply don’t work as well as NDT. There’s a good reason I stopped taking them. But my thyroid can’t produce enough hormones on its own, so what choice do I have?

For any of you who take NDT, stock up now! Get extra refills if you can. Because the next few months could be rough for anyone with hypothyroid who takes these necessary, life-saving medications. And if you know anything about why this back-order is happening, please comment below or email me at msrants at gmail dot come because I would love to know.

Good luck to all of us. Let’s hope they bring our medication back soon. Because our lives depend on it.

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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!


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!


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.


Goodbye food stamps

November 26, 2018

Edit 11/27/18: I must apologize to all of you wonderful readers for the errors in the original version of this post. As it turns out, the income limit for food stamps was not cut in half. The person on the phone didn’t know what they were talking about and the appropriate information was missing from their web site (both of these issues have been reported.) So that part is good!

However, I have still lost my benefits for now. The reason is that in determining the income limit, medical deductions are not counted. WTF?!?! My income had gone up, and I am now $20 over the limit. Just $20!!! However, my income has since gone down again, so I can resubmit paperwork to get my benefits reinstated. It’s a lot of effort, but worth it.

But think about how hard it was to learn this. I got a letter with misinformation. I spent 45 minutes on hold to speak with someone who gave more misinformation. I spent the night thinking my benefits were cut off. Then this morning someone called me back and explained it all. Why wasn’t that explanation put in the original letter?! The system is broken in so many ways. Not to mention the part where I lose $172 every month in benefits because my income is $20 too high. If they want people to get off benefits, this isn’t the way to do it, because this just encourages people to earn less so they don’t fall off the benefits cliff! Now back to the original post….

Benefits in the U.S. (and many other places) are majorly screwed up. Today I’ll tell you how I lost my food benefits, which I just learned about a few minutes ago.

When I first became disabled, I wasn’t eligible for the SNAP program (formerly called food stamps) because my assets were too high – meaning I had too much money in the bank. But then they changed that, and I was able to sign up. For 4 years I have received money every month to buy food.

The limits are strict. I can only buy certain kinds of food – nothing from the bakery, for example. And only food – no soap or toothpaste or toilet paper. Still, it helps a lot!

Until this year, I was getting the maximum amount for a single person in Massachusetts. It didn’t cover everything, which was worrisome. I’m small (around 125 pounds) and sedentary. How would someone bigger and more active manage on that small amount? Luckily for me, I have savings, so I used that to make up the difference. Friends of mine went to food pantries. Sucky, but that’s our system.

Earlier this year my benefits were lowered by $20. That sucked, but I knew it would go back next year when I filed my 2018 taxes, showing less income. It still surprised me that with my low income I wasn’t getting the maximum anymore. Again, a very messed up system.

And then yesterday I got a letter saying my benefits were getting cancelled. Part of the reason had to do with me not being disabled. Of course it was a weekend, so I had to wait. In the meantime, I did some research. New guidelines came out on October 1, but even so, I should qualify. So today I called. After 45 minutes on hold, I got someone. She didn’t know much and I had to keep correcting her. Finally, well over an hour after I’d called, it was 5pm – time to quit. She said she or her supervisor would call me back tomorrow. But I’d learned one thing: the income limit she used was half of what I was seeing online. I said that, and she couldn’t explain it. So after we hung up, I did more research.

In many states, there’s no asset limit, but in Massachusetts there is. Here’s how it works: if you’re not disabled, there’s an asset limit (about $2000.) If you are disabled, then there’s a higher asset limit (about $3350) but only if you earn more than a certain amount. If you earn under that amount, you can have any assets you want. If you earn over that amount, there’s an asset cap. A house doesn’t count. Cars don’t count. But money in the bank does count. I have enough in the bank to cause a problem if they look at my assets, but my income was always low enough that it wasn’t an issue.

And I’m glad for that money in the bank! It’s there for emergencies. It pays for medical expenses when there’s a month where they cost more. It will pay for my new car when my current car dies. It pays for a dinner out with friends once a month or a new sweater or two from the consignment shop. It’s what kept me from having to move in with my parents while I waited for over 2 years for SSDI to come through. I worked my ass off for that money in the bank. I spent my career working in nonprofit, which as we all know, doesn’t pay very well. And I was living in Boston, one of the most expensive parts of the country. Saving that money was NOT easy! I cut back on a lot of things to save that money. As my friend Rob said to me a few minutes ago: “You’re being punished for doing everything right except being able bodied.”

Because now that money in the bank counts against me.  But it shouldn’t.

You see, until October 1, the income limit was 200% of the Federal Poverty Level (FPL.) That comes out to $2023. That’s a tiny sum in this part of Massachusetts. Especially for someone who is disabled who could easily spend hundreds every month in health expenses. I was under that amount, so my assets were irrelevant. Then on October 1 they changed the income limit to 100% FPL. That comes out to $1012!

Think about that for a minute. In an area where a 1 bedroom apartment in lousy shape will cost at least $800 per month, the income limit is $1012. So if you earn $1015 and pay $800 for your apartment while you’re on a waiting list for Section 8 housing, you now have $215 to pay for food, medical expenses, transportation, and anything else in your life. It just can’t be done. So you have to dip into your savings. Let’s say your assets are just a bit over the limit, around $4000. How long do you think that will last you? A year if you’re lucky? Probably less. At that point you can now get on benefits. And if you have an problems where you need savings, you have spent them all and you’re now entirely fucked.

Or maybe you earn more. Maybe you earn $2000 and you have $10,000 in the bank. That’s plenty of money, right? Not really. It’s hard to live on $2000 in this area if you’re able-bodied. If you’re disabled, it’s not enough. You’ll have to take money out of savings each month. As soon as you have to pay for a car repair or two, or a couple of large medical expenses, your savings will be gone.

There’s no perfect answer. I get that. But to cut the income limit in half is cruel. To do so without warning anyone is heartless. To send out a form letter that doesn’t explain any of this and just cut off people’s benefits is both.

You know that safety net everyone is always counting on? Watch out, because the holes just got even bigger.


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.


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