Wishing someone would tell me what to do

August 20, 2018

When I was a kid and I didn’t feel well, my mother would bring me a cool cloth for my forehead, some children’s Tylenol, juice, and toast. She took care of me. She told me to rest, to watch tv, to read a book. She told me if it was severe enough to go to the doctor. I didn’t have to think.

It’s not like that as an adult. Now I have to take care of myself. I have to remember to take the medicine, to rest or not, to buy juice at the store. Of course I miss having my mom take care of me when I’m sick, but mostly I manage those things ok. What I miss the most, though, is someone else telling me what to do. Making the big decisions.

Sure, I still struggle sometimes with when to take the Tylenol when I have a fever, but that’s not such a big deal. The harder piece is choosing which treatment approach to take with my chronic illnesses.

I have a long list of illnesses of course. And just when I think I know where to focus my attention, one of the supposedly not-so-important illnesses taps me on the shoulder, winks, and then pushes me down a flight of metaphorical stairs.

Like my PCOS. Everything seemed to be just fine, and then I got a period so heavy that my doctor told me to go to the emergency room due to the blood loss. Then I became depressed for several weeks as my hormones did wacky things. Not fun. I was already considering trying a new way to manage my PCOS, but that episode made it clear just how necessary a new plan was.

Now I have seen 4 medical practitioners who I trust a lot, and I have 4 potential treatment approaches. And I don’t like any of them. I desperately want someone else to tell me what to do.

You see, most people just take birth control pills and they’re fine. The problem for me is that birth control pills make me incredibly sick. Since those aren’t an option, I need to find something else. (Sometimes Metformin is prescribed. I tried this once and immediately had an allergic reaction, so that’s not an option, either.)

It’s easy to knock out 1 approach right now: the one I’ve already been doing. It worked great for many years but has recently become ineffective, so that has to go. But what about the other 3? They each seem reasonable, but which to try? Each of them has the potential to make me feel incredibly ill, so I’m not anxious to try any of them, but not doing anything isn’t an option. Each doctor makes an excellent case for each approach.

I will try one, and if I don’t immediately have horrible side effects, it will take months to know if it works. So it could take a year or more to find a treatment that works. If any of them do.

I want someone to tell me: do this. Simple. Easy. But that isn’t an option, either. So I will continue to debating, to research, to question. And in the end, maybe I will make the right choice and maybe I won’t.

These decisions are complicated and difficult. Sometimes the choice is obvious (though still not easy) but often it’s not. And no one is going to make it for me.

In case you’re curious, here are my current options (from an endocrinologist, a naturopath, a women’s health nurse practitioner, and a gynecologist – clearly I’m not limiting my sources!):

  1. A progesterone compound. I feel sick when I take it and it no longer works effectively to give me a predictable cycle.
  2. A supplement called Calcium D-Glutarate. It should help balance out estrogen. This appeals as an easy thing to take that can be easily stopped, but I’m concerned about what it does. It lowers estrogen, and the other practitioners say I need to increase progesterone and estrogen and/or lower testosterone, so I’m not sure this is the right approach for me.
  3. Progesterone cream. It’s harder to dose and I have to be careful to not damage my skin. It would hopefully fix my cycle but not the other symptoms so I would have to take spironolactone. This makes me nervous because it’s a blood pressure medication and my blood pressure is already too low.
  4. An IUD. This makes me nervous because if I have a reaction, I can’t quickly remove it myself. Again, I would need to take spironolactone in addition.

If any of you folks with PCOS have tried any of these things, I’d love to hear about your experiences! Maybe you can help me make an informed decision. Because I’m not having much luck so far.

6 Comments | Decisions, Frustration, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

Getting a break from the nightmares

August 17, 2018

While I have had symptoms of chronic illness for over 25 years (wow, that makes me feel old!) I only started having recurring nightmares in more recent years.

First there were the dreams where I felt the impending diarrhea and couldn’t find a bathroom, then when I finally found a bathroom the toilets were either set way too high on the wall (like, 4 feet off the ground!) or there were no doors on the stalls. I was trying to hold it in and feeling more and more desperate, but I couldn’t find a usable toilet that I felt comfortable with. I always woke up feeling stressed out and anxious.

Then there were the dreams where I’d be having a lovely time with family or friends. We would be passing food around the table and without thinking I would take a bite of bread or a cracker and after swallowing I would realize that I just ate gluten! Again, I would wake up stressed out and anxious. And wondering if I had really eaten gluten.

The dreams didn’t happen nightly or even weekly, but they kept returning. And no wonder. I was fastidious about avoiding gluten, but somehow I occasionally was glutened. And there was always the fear that I would slip up and eat it by mistake. There were multiple times I needed a toilet desperately and had trouble finding one. These were real life problems.

And the thing is, they still are. I haven’t been glutened in a while, but it’s happened this year, and I’m more nervous than ever about avoiding gluten. As for the diarrhea, I’d love to say that’s a thing of the past, but it’s not. It’s less frequent, and I’m incredibly grateful for that, but it still happens.

So imagine my surprise when I realized the other day that I haven’t had either of those dreams in months! I was free!

Will I ever have those stress dreams again? I have no idea. Even if I don’t, maybe there will be others. Again, I have no idea. All I know is that I’m not having them NOW!

I would love to say it’s because I’m less stressed out, but I’m not. In fact, lately I have been feeling more overwhelmed than I have in a long time. But at least I can get some rest in my dreams. I guess that’s a start.

2 Comments | Expectations, Milestones, Raves, Symptoms | Permalink
Posted by chronicrants

Gluten free dish soap? I’d love your advice!

August 1, 2018

I feel stuck, and Google hasn’t helped at all. It feels like every day, I find some new non-food thing that needs to be gluten-free. Or I need to check a new purchase of something that I used in the past, because just because something is gluten-free once doesn’t mean that it will be again. My current challenge: dish soap.

Two weeks ago I went on a search for gluten-free lipstick and found a bunch of brands that will be safe (though I still haven’t chosen which colors to get – that’s the harder part!) Last week I found gluten-free hand sanitizer after only a few attempts. But now I’m trying to figure out dish soap.

I want to get Dawn dish soap, but when I called the company, they couldn’t make any guarantees. They don’t add any gluten ingredients, but they can’t guarantee that the raw ingredients they get from other manufacturers are gluten-free. So it might be safe, but we can’t be sure.

But then I started thinking, does it matter? Wouldn’t it just be tiniest trace amounts? And I wash it off the dishes before I eat from them anyway, right? And when I eat gluten-free dishes at restaurants, I don’t check that they use gluten-free dish soap. Ditto for when my mom cooks for me. And I’m fine with those. So maybe it isn’t an issue?

I just don’t know, and I don’t know who to ask. I don’t have a medical professional I can turn to. So I’m asking you, dear readers, for your experiences. Some of you might say it matters and some might say it doesn’t, but either way, I’d love to know what you think. Please share in the comments: if you have Celiac or non-Celiac gluten sensitivity (NCGS), do you get gluten-free dish soap? Do you think it matters?

4 Comments | Educating, Frustration, Rants | Permalink
Posted by chronicrants