Acknowledging the pressure

July 23, 2019

“You’re feeling a lot of pressure.” When my therapist said those words, everything clicked into place. Yes! That’s what I was feeling and unable to acknowledge for myself, much less express to her, but she figured it out. And suddenly, it all made sense.

It’s hard enough to feel ill all of the time, but I also feel responsible for how I address my illnesses. I go to 5 different doctors and get 6 different opinions. I do my own research and figure out a course of action, but no doctor will order the tests I want or the prescription that I feel will help. I try to sort through all of the possibilities, the research, the unknowns, the assumptions, the inconclusive data. I talk to experts and I ask questions of other patients. I look at as many resources as I can. But at the end of the day, it’s up to me, and me alone, to decide what to do.

That’s a lot of pressure!

I want to feel better. I want to feel as well as possible. I don’t know what that is. Would that mean I was well enough to walk 3 miles? To finally get and care for the dog I’ve always wanted? To attend a wedding without having to leave early? To go out 3 nights in a row without becoming so ill that I can’t function for days afterwards? What is a reasonable goal? I don’t know. No one knows. But still, I aim to feel better, whatever that might be.

And as I aim to feel better, I must make myriad decisions. It’s scary and overwhelming. I have a bit one coming up in a day and a half and yes, I am overwhelmed and scared. I have a lot of research to do between now and then. I worry that my doctor might not agree with the approach I want to take or vice versa. I could be wrong. I won’t know until I try this new medication. This is my health, my one and only body, my life. If I get this wrong, there are no do-overs. The result would be damage that is likely irreversible. On the other hand, doing nothing will also result in irreversible damage, which means I have to do something. And I am the only person who can ultimately decide what that something will be.

So yeah, that’s a shit-ton of pressure. And I hate it. At least now I recognize it for what it is. I am learning to sit with my feelings. Still, the pressure is intense and it’s real. This is my life that I’m deciding about. I hope I make choices that improve it.


Yes, it’s a choice

June 11, 2019

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

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

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

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

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

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

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

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

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

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


Choosing convenience

May 20, 2019

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

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

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

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

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


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?


Between a rock and an iron infusion

March 12, 2019

I feel so stuck, and I can’t get this out of my head.

It’s pretty apt, as you’ll see.

I have been anemic for ages, but mostly it was ignored. Whenever I tried taking iron supplements they made me sick, and eating iron-rich foods didn’t help, so instead I did nothing. After all, most of my iron tests were fine, it was only my ferritin that was low, and that wasn’t a problem, right?

Then back in 2012 I started doing my own research into why I was so sick and I found all sorts of useful answers. I would be so much sicker without that research (shout out to public libraries!) Among other things, I learned that low iron levels would impede my thyroid improvement via medication, so I had to address it. My regular doctors weren’t helpful, but I managed to see a hematologist in 2013. He prescribed iron infusions and those more than did the trick – my ferritin levels went through the roof.

Over the past six years my ferritin levels have slowly come back down to within the normal range, then lower within that range, until finally 10 months ago I became anemic again. Oy.

I put off dealing with it while I managed some other health issues, but finally I took iron supplements that my naturopath recommended as being especially easy on the stomach. We started out with 1/2 the normal dose. At first I felt ok, so I figured there was no problem. But after weeks of feeling sicker than usual, I finally realized the problem had to be those iron supplements. Within a few days of stopping them I felt a lot better, but I had lingering symptoms for another month and a half.

After that experience, I didn’t want to try iron supplements again. My naturopath suggested taking an even smaller dose, but I had been so sick for so long that I just couldn’t bring myself to do it. Some folks recommended cooking with cast iron pans, but they’re too heavy for me to lift. A friend found something called Lucky Iron Fish and I actually bought one. It’s like cast iron pans, but you boil it in water and then drink the water to get the iron off of it. I chickened out and it’s been sitting in a drawer for months. I don’t want to risk getting so sick again.

But I have to do something. That’s the problem. I made an appointment months ago with a new hematologist, and it’s finally coming up next week. I made the appointment with the idea that I would get iron infusions again but now that the time is here, I’m hesitant. What if the infusions make me really sick? Back in 2013 I don’t know how they made me feel. I was doing so poorly that it was impossible to tell. I had only started seeing my naturopath two months before, had just being adrenal supplements, and hadn’t even started natural dessicated thyroid as my new medication yet.

Now I am in a better place. Overall I feel hugely better compared to where I was in 2013. On the other hand, I’m still struggling every day, and the tiniest thing can make me feel like crap for weeks or months; like those iron supplements I took last fall. So I want to risk a major setback? And unlike supplements, I can’t change my mind and stop. Once I have an infusion, that stuff is in my body.

And what’s in the infusion besides iron? Chemicals? Additives? Other things that could make me ill? I already have a long list of things my body reacts badly to: everything from the dye used in brain MRIs to lavender, corn, various medications, gluten, the pesticides on apples, broccoli, and so much more. And those are only some of the things I’m aware of. I have been thinking lately that there are probably more things I am reacting to. What if some of those things are in the infusion?

So I’m rightly scared and I don’t know what to do. I’m hoping the hematologist has some brilliant idea that I’m currently unaware of, but otherwise, I’ll have to make a tough decision soon. Should I risk the infusion? Try the iron fish? Remain anemic?

For anyone who has dealt with iron infusions, I would love to know what you think! Making medical decisions is often hard, so this is nothing new, but that doesn’t make me feel any better about it. Because no matter which option I choose, I know it could potentially be very bad.


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!


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.


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