Impatient for Improvement, Part 2: Stubbornness

September 19, 2013

Brain fog kicked in when I was writing my last post. I lost my train of thought and never came back around to something I really wanted to write about. Then fatigue kicked in and stopped me from proofreading my post. I hate to think about all of the typos, but by not rereading it I also never realized what I forgot to write. So here’s what I would have included:

There’s a danger in having such high hopes. The great thing is that it’s helping me to feel positive, to look towards a brighter future, to feel that there’s potential for and improved quality of life. But the downside is that it might not work. I could be completely wrong. My symptoms could be from another condition or from many conditions. Or maybe I’m right about the problem but for some reason it can’t be fixed. What then?

We all go through many stages of acceptance with our illnesses. I went through denial and depression and anger before finally accepting my condition. Then I got a new diagnosis and I went through it all again. Two years ago I thought there was no hope at all for improvement. I desperately hoped to find a way to slow down the progression, but I couldn’t find what it might be. I felt that what I had was permanent and would only get worse. Even remembering that now, typing these words, my eyes are filling with tears. It was a difficult time.

And then I took matters into my own hands. I read books, called medical professionals around the country, spoke to other patients, and slowly, very slowly, got an idea of what was going on with my body. That is what has brought me to where I am now.

My current status isn’t great. I know that. But I also know that it could be worse. It was worse. It was worse just two years ago. And that tells me that even if I can’t improve the way I want to, at least I may be able to prevent a backslide to where I was, at least for a while. It also tells me that even if I’m wrong about my current problem, I may be able to figure out another course of action. I may be impatient, but I’m also stubborn as hell. I get annoyed at how stubborn my parents and grandparents can be, but I also thank them for it. After all, they passed that stubbornness on to me, and it is what’s keeping me going, propelling me to move forward, and making me refuse to accept defeat from my illness.

I know I might be wrong about my current health plan. I know that. But I also know that I lived without hope for improvement for many, many years and I managed. I also know that in the long term I can keep a somewhat reasonable level of health; at least, it’s better than what I had before. Finally, I know that I will not give up in the long term. Sure, maybe I’ll give up for short periods of time, but overall, I’ll keep fighting. I’ll hold on to the stubbornness.

 


Impatient for Improvement

September 17, 2013

I vaguely (damn brain fog!) remembered writing something about wanting to get better soon, so I looked through recent posts and found this one. It’s hard to believe that was only a month ago. I feel like so much has changed, even while it’s all stayed the same.

In that post I wrote about a recent increase in energy. Unfortunately, that didn’t last. After several glorious weeks I had a physically difficult treatment, had several bad days following it, and never got that energy back. Still, I’m feeling fairly optimistic. That when attitude has really taken over my entire perspective.

After many, many years of symptoms, I’d gotten good at understanding my body, but recently it’s gotten to a whole new level. I’m more aware than ever of body temperature changes, heart palpitations, joint stiffness, and other smaller symptoms that I used to ignore. I’ve gotten a really good sense of what’s happening with my body.

On top of that, I’ve been reading! Thanks to my local library, I’ve read a bunch of books about what I now believe is the main cause of most of my serious symptoms: Hashimoto’s Disease. I believe that Hashimoto’s caused my hypothyroid, and when the hypothyroid wasn’t properly treated it led to adrenal insufficiency, low iron, and other issues. For once, I think I know what’s wrong. And even better, I have an idea of how to treat it!

The thing about treating hypothyroid is that the secondary issues (low iron, adrenal insufficiency, vitamin and mineral depletion) must be treated first or else the thyroid treatment won’t work and it could even make symptoms worse. I’ve been working on fixing those secondary issues for a while and I think I’m getting close. I will have tests done next month that will confirm if I’m ready to begin the thyroid treatment, which is very different than the thyroid treatment I’ve been taking for many years now. It’s possible those tests will show I’m not ready to start this new treatment, that I need to work more on the secondary issues, but it’s also possible that I’ll finally be ready to start something new and promising!

So every day I continue to read books that make it sound like this new treatment (or one of the alternative treatments) could do wonders for me. I participate in online patient groups where others talk about how much better they feel after just a few weeks or months (or sometimes even days) on this treatment, after getting off of the one I’ve been taking. I see what could be for me, and I want it so badly! It’s right there, sitting on my dresser. Literally. I filled the prescription already so that it will be ready as soon as I get the test results. (I didn’t want to take a chance of having any last-minute insurance issues or anything, so I filled it as soon as I got the prescription.)

Patience is a virtue that I’ve never had. Hey, no one’s perfect. We all have our faults, and mine is that I’m impatient. But this is a whole new level. It’s one thing to be impatient to get a new cell phone, try a new restaurant, or complete a project. But a return to health* would be HUGE! On the one hand, I’ve waited for years, so what’s a few more months. On the other hand, I’ve waited for YEARS so why should have to wait any longer? I’m ready to be done with the waiting part. I want to be on the doing something part. Sure, I’m doing something by researching and making plans, but I see that pill bottle sitting on my dresser and I’m so impatient to try it. Just try it. Maybe it will work. Maybe, a few months from now, I’ll feel better. Maybe I won’t be sitting home more days than I’m going out. Maybe I won’t have to turn down invitations to go out at night. Maybe I’ll be able to go back to work and earn an income again. Maybe I can feel mostly ok. Or maybe not, but I’d like to at least try.

So for now I’m waiting impatiently to at least try to improve. In 5 or 6 weeks I’ll have all of my test results and I’ll know, one way or another, if I’m ready to move on to this potentially exciting next step. Please send good thoughts my way – I need all the help I can get!

*Like I’ve said before, I don’t expect to ever be 100% healthy again, but I do think I could be much, much better than I am right now.


Am I really ready to date?

September 14, 2013

I have a date coming up, and suddenly I’m not so sure if I’m ready to date.

I’ve written before about my insecurity around dating because of health stuff and about getting back into the dating world after a long absence. I’m trying to get over those insecurities, but that’s not what’s holding me back. Right now, the issue is the physical logistics of dating.

I’ve had a crush on this woman for a long time, and the other day I finally asked her out. And she said yes! I’m so excited that she said yes! She knows about my health stuff and has always been very supportive. She doesn’t mind when I cancel plans at the last minute or when I need to make accommodations for myself. She gets it, and she always tries to help. So it’s not like a usual date, where I have to worry about disclosing and how the person will handle it – she already knows, and she still wants to go out with me, so yay!

So you’re probably wondering what my problem is. Well, we started talking about when to go out, and I got a bit stuck. I’m sure at least some of you can relate. I need to have the energy to not only go out, but to put on a good face. She knows about my illnesses, but I still want it to be a fun evening, of course. So I looked at my calendar: big event Sunday, so I’ll need to rest Monday; Tuesday is ok and maybe Wednesday, but I have plans Thursday so that means Thursday night is out and probably Friday too; I have something big Saturday so that means I can’t go out Sunday; that next Monday I have an exercise class for people with pain in the late afternoon so I’ll probably be to tired to go out in the evening; I have a medical appointment late Tuesday afternoon so Tuesday evening is also probably out…. and so on. Not good. Luckily she’s free this Wednesday. That means my plans on Thursday will completely exhaust me, but I think it’s worth it. But if we both want a second date? I can’t imagine how we’ll pull that off.

Of course, then there’s the date itself. She suggested dinner and a movie, but she was very understanding when I explained that sitting in those cramped theater seats for two hours does bad things to my knees. And she even asked if dinner would be too difficult. I think I can find a good place for dinner, and afterwards we may see a comedy show. I’ve been to that place before, and the seats will allow me to stretch my legs, plus it’s easier to get up in the middle if I have to. But there’s still the issue of staying awake. I get sleepy earlier now. Staying out “late” is hard. The good thing is that even though I don’t work, she does, so I imagine that she won’t want to be out late on a Wednesday.

All of these logistics have me worried. Maybe I’m not ready to date after all? I’m hoping that being out with someone so understanding will help, but I also don’t want her to always have to be so understanding. I want us to have fun. I want to enjoy myself. I’ve liked her for a long time and I don’t want to screw this up. I’m going to try to focus on the main thing at the moment: she said yes! Hopefully the rest will work out somehow.


I’m no scientist but you can look it up yourself

September 11, 2013

A few months ago I wrote about how annoying and ridiculous it is when people ask me why my body works the way it does. Well, I think it’s even more annoying and ridiculous when people ask me why certain foods contain gluten.

I’m not kidding. This happens all the time. I have no idea why. A friend who’s vegetarian won’t eat marshmallows. She told me there’s animal fat or something in it (I forget exactly what.) I accepted it. I didn’t ask why they use those fats in marshmallows. And yet, people ask me about gluten constantly.

Last week, for example, I went to a small gathering with friends. As usual, M cooked. As usual, I brought my own food. M reviewed what was in the food for the sake of the others, then mentioned how glad she was that I bring my own food, just in case. I’m glad she appreciates it!

Later we were talking about the food, and I took some of the plain steamed veggies. I mentioned how they were the only thing of hers I could eat. M pointed out that I could eat the mashed potatoes, but I pointed out that she’d said earlier it had vegetable broth in it, and that store-bought broth almost always has gluten. She was surprised. Then, I kid you not, M’s wife looked right at me and asked, “Why do they put gluten in broth?” I told her I didn’t know and quickly changed the subject. I mean, I didn’t make the broth! How the hell should I know why gluten is in it? Why should I care? And yet people ask me that all the time! Like a couple weeks ago when I said I couldn’t eat Chinese food because of the soy sauce, and my friend asked me why there’s gluten in soy sauce. Again, how the hell should I know?

 

So to be clear, I don’t give a flying fuck why there’s gluten in broth, soy sauce, some vinegars, salad dressings, or a bunch of other unexpected places. I just know there is. I just know what I need to avoid in order to protect my health. What’s important is that gluten can trigger an autoimmune response, which is why I spend extra time and effort to buy gluten-free versions. I just barely know what it does to my body. I don’t know or care what it does to food. So if you care, you can go find out for yourself.

And that will be my response from now on. The next time someone asks me why a food contains gluten, what it’s purpose is, I will tell them that I’m no scientist, but they are welcome to look it up and let me know. Then I will walk away. It’s just not worth my limited energy to deal with those absurd questions.


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