Fallout from the mystery trigger

March 28, 2019

It started with horrible eczema on my hands. All day they were fine, then they were dry, tomato red, painful, cracked, and bleeding. Later there was gas. Then abdominal pains. Then constipation. Finally diarrhea, as my body got rid of the offending element and everything else I had eaten.

Clearly I ate some gluten or corn at some point. But I wasn’t all that sick, all things considered. This didn’t last as long as some other episodes. Plus, I’m super careful. Still, I had stayed over at my parents’ house, and even though I tried to be careful, there were crumbs everywhere, and we all pet the dog before and after meals. And we ate out at a restaurant that has always been ok for me, but maybe they made a mistake? I just don’t know, and not knowing makes it even harder.

The next day I was fatigued, but that makes sense. After all, my body had been through a lot. I had turned off my alarm clock and slept much longer than usual. Still, I was worn down, so I spent the day watching tv. I didn’t eat as much as usual, but I ate. I figured I would be fine by the follow day.

Yet I woke up today still feeling fatigued. It’s close to noon and the fatigue and brain fog are both intense, and much worse than what I typically experience. I am having trouble thinking clearly, and I wonder how much sense this post will make when I read it in a few days. Assuming I’m feeling better in a few days. Because who knows?

Now I am wondering how long this will last. I already canceled my therapy appointment tomorrow, but I have a big family event the following day – should I go? Even if I’m feeling better, would I be up to the hour-long drive in each direction? And to make it even worse, I finally scheduled that iron infusion, and that’s just 5 days away. I want to get it over with, but will my body be strong enough?

I don’t need to decide these things yet, but I will have to soon. If I skip the family event, I need to give another person time to make alternate travel arrangements. If I reschedule the iron infusion, I can’t do that at the last minute, especially since a friend is arranging her schedule so that she can go with me.

I have no idea when I will feel better. It could be later today or in a month. And what’s especially frustrating is that I don’t know what caused this! I wish I knew. Was it corn? Gluten? Something else I can’t have that I’m not even aware of yet? Was it the restaurant or my parents’ house or somehow something else?

I’m frustrated more than words can say, but there’s nothing I can do. Which is why in about 90 seconds I will once again be sitting on the couch, watching hours of tv. Because I just don’t have the energy to do anything else. Not even the many things I wanted to do today. And it’s all because of something I ate, even though I don’t know what.

2 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

I don’t know what to hope for

March 21, 2019

I read a lot of stories about patients improving to the point of their symptoms going into remission and even being able to take a jog or get a job. Of course, I also read stories about those who get much worse are are unable to care for themselves. Right now I fall somewhere in the middle, and I very much want the former but worry about the latter.

It’s hard to be involved in the chronic illness community and not hear these stories, I suppose. I read blogs and follow various Facebook groups. I imagine I would see a lot more if I was on Instagram on Twitter, but that’s more than I can manage right now. So often I worry about getting permanently sicker. It’s one of my biggest fears. But every now and then, I wonder, could I get better?

Now I’m not fooling myself. I will never job – my knees are permanently unable to support jogging. I can’t imagine how my symptoms would ever go fully into remission. But what if I could still get significantly better? Is that even possible?

When you sprain an ankle, your expected outcome is to completely heal. When you get a cold, your expected outcome is to completely recover. But when you have chronic illness, there simply is no “expected outcome.” I read stories by thyroid patients whose symptoms went into remission, but they usually caught it early on and immediately treated it properly. I did not. I read stories about folks with adrenal insufficiency who recovered completely, but they usually caught it early on and were able to remove the offending stressor. I did not catch it early on and my stressor is my chronic illnesses, which will never go away. So what is realistic for me?

There are no answers. I know that. But that doesn’t make it easy to wander through this maze of diagnoses, doctor appointments, and tests, constantly striving for better health but not knowing what to aim for. On a scale of 1-10, the year after I started this blog I was probably at a 3. Now I’m probably at a 5 or 6. I know I will never be at a 10, or even a 9. But is an 8 possible? Is a 7 possible? Already I wonder if I have reached my maximum possible health. But at the same time, I keep trying.

I keep trying because I see the possibility. I have given up many times over the years. I stopped trying to get better because I didn’t know what else to try. Now I have a list of things to try. I don’t know if any can help, and some may even hurt, but how can I not at least try? Some are obvious, like my upcoming infusion (yes, I’m doing it) for anemia and low ferritin. Increasing my pregnenolone makes sense, because blood tests show it’s low, and it’s necessary for progesterone and cortisol production. But should I take Cortef to treat my adrenal insufficiency? Or maybe my fatigue isn’t from adrenal problems at this point but from something else? I continue to find and elimination sources of corn in my diet, most recently realizing that my calcium and vitamin C supplements contain corn. I stopped those a couple of weeks ago and already feel much better. Maybe there’s more corn sneaking into my diet? I have no idea how careful I need to be and don’t want to go overboard, but eliminating corn seems to help. I want to try LDN (low dose naltraxone) which some patients report has helped with their autoimmune disease.

There are more specialists I want to see, supplements I want to try, dietary changes I am considering. Each of these takes ages, and can easily be derailed. I was going to try increasing my pregnenolone this week, but then I found out my compound thyroid was made as a slow-release version, which no one told me (and the doctor didn’t order!) and that explains some of my current problems. I am going to start the correct version of the medication in a few days, and by the time I have adjusted to that, it will be time for my iron infusion. I will need to wait a few weeks after that to see how I’m feeling and if I need a second infusion before I consider other changes.

Any time I make a change, I wait for weeks, sometimes months, to make sure I still feel ok. And so often, some other symptom or reaction gets in the way and I need to delay my plans. That means it will probably take me 2+ years to get through my current list of 9 things I want to try.

It would be so much easier to give up. I’m in a pretty good place, and maybe I should just be happy with where I’m at. But then I think about having to miss my very close friend’s surprise party last weekend because I didn’t feel up to going. And I think about the pain several days ago that was so bad, I had trouble functioning. And I think about those days that the fatigue wears me down unexpectedly. And I think about what happens if one day I want to get married, and I can’t even have the kind of wedding I want because I won’t have the energy for it. And I think about how much I want to spend the entire day with my nieces and nephews but I don’t have the energy for it.

And then I decide to try again. Because maybe I won’t get any better than where I’m at right now. Maybe this is as good as it gets. But maybe it isn’t. Maybe I can nudge my way up to a 6.5 on that scale, and wouldn’t that be worth all of the effort?

2 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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!)

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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.

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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.

3 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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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