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.


Finding the sweet spot for sleep

August 28, 2013

I don’t know about you, but sleep, and lack of it, has always pissed me off.

When I was a kid, I hated bedtime. I was never tired. I would stay up reading for hours. Sometimes I would hide 20130828_171154under my covers with a flashlight and read until 3am. I just wasn’t sleep.

As an adult with all sorts of health issues, that’s just one of my sleep problems now. Sometimes I’m not sleepy at bedtime. Sometimes I fall asleep without a problem, then wake up complete at 3am. Sometimes I sleep for 10 hours and wake up feeling as if I hadn’t sleep much at all. I almost never wake up in the morning feeling rested. Still, I’ve recently had some success in the sleep department. It both surprises and excites me, so I’m hoping to continue it. Sometimes I’m sleepy at bedtime. I’m not waking up as much during the night. I wake up feeling tired, but that goes away with an hour or two. So I’m not there yet, but I’m enjoying the progress I’ve made so far.

Here is what works for me (in no particular order):

  • The room must be cool, bordering on cold. I use an air conditioner through most of the summer, fans are on all year round, and sometimes I open a window even in the dead of winter (and remember, I live in Boston, so our winters aren’t warm.)
  • I keep the room fairly dark. Of course, the shades need to be open if the windows are (so I can get fresh air, and also so they don’t make noise while being blown around.) For the light that gets in, I cover my eyes. Wearing a sleep mask helps a lot.
  • White noise is a must. When the air conditioner is on, that’s plenty of noise. In the fall, winter, and spring I use an app on my phone. This has made a huge difference for me. It helps to block out the city noises outside my window. Sure, I still hear the garbage truck in the morning, but the screeching of brakes and drunken yells during the night from the sidewalk don’t bother me anymore.
  • I have a bedtime routine. Getting undressed, brushing teeth, etc. all happen in a certain order. This cues my body that it’s almost time for sleep.
  • I wear as little to bed as possible. Most nights I just wear underwear (if that.) I find that clothes make me too warm. They also get tangled when I roll around in my sleep, and that wakes me up. If I must wear clothes, I make sure they’re as comfortable as possible.
  • My bed is really comfy. I have a great mattress and spring board, soft sheets, and blankets that are the right amount of warmth for each season. I spend more than 1/3 of my days in that bed, so I want it to be fantastic.
  • I read before bed every night. Some nights I read a lot, other nights I fall asleep after a paragraph, but I always read. I’ve found that if I don’t read, my mind wanders to things I did, things I need to do, people I need to talk to, problems I have to deal with, etc. Sound familiar? Reading is a great distraction, but it has to be the right reading. Personally, I can’t read books about health stuff before bed because I get upset or my mind starts churning. For me, light novels are the best bedtime reading material.
  • I moved around my supplements. I now take my zinc and magnesium in the evenings and at night. I heard about this from other patients and I think it has helped.
  • I avoid screens before bed. No tv, no computer, no cell phone. They say to avoid these for at least an hour before. I’ve found tv is ok until near bedtime, but I need to avoid the computer for at least an hour beforehand. This isn’t just because of the effects from the light of the screen (though that too) but because I get sucked into interesting articles, feel tempted to read just a few more Facebook status updates, want to answer some emails, and too much time goes by and I stay up too late. Plus, the things I do online tend to get my mind churning and sometimes my bedtime reading isn’t enough to stop it. I’ve found that tv is ok, and books are best in that final hour.
  • I went to a sleep clinic and met with a great doctor there. He suggest I take low doses of melatonin to help me get sleepy at night and to use a blue light in the morning to help me wake up. These have worked really well, though I’ve found that if I take melatonin too often then I’m drowsy the next day. Still, it’s a huge improvement.
  • Food and water make a huge difference. Thanks to a strong bladder, I never wake up during the night to pee. I drink a lot right before bed so I’m not thirsty during the night. I also mentally check in on my stomach a couple hours before bedtime. If I’m not entirely full, I have a snack. That way, hunger won’t wake me up, either.
  • I don’t eat close to bedtime. That definitely messes up my sleep.
  • An exception to the last one: I take a couple sips of orange juice before bed. This is new. I read that if you have adrenal fatigue (which I do) and you wake up around 3-4 am (which I often did) then you could be dealing with a drop in glucose levels. OJ helps with this. So far it’s working. I’ll have to see how that goes.
  • I set my phone to not show any blinking lights at night for text messages, phone calls, etc. That way if for some reason I do wake up and take off my sleep mask, I won’t be tempted to check my phone. I keep it near the bed for the white noise app and so I can check it when I wake up, but I don’t want to check it during my sleep times and this helps.
  • I have a clear rule for all friends and family: no phone calls or texts before 9am unless it’s a true emergency. If I’m really in dire need of extra sleep then I shut off all phone sounds. Otherwise, I leave it on knowing that if I get a call before 9am, it’s probably either an emergency or a doctor’s office/lawyer’s office/insurance call, and I want to get those at any hour.
  • When I’m mentally stuck on going to bed, I remind myself of everything I did that day. That way I remember just how many hours I’ve been awake, and going to sleep doesn’t seem so bad. I also remind myself of everything I want to do still that night, and how much easier and more fun it will be to do those things after I get some sleep.
  • I go to bed around the same time every night. I wake up around the same time every morning. That really helps!
  • I’m treating my adrenal fatigue, which is getting my energy levels where they should be. I’m not there yet, but I’ve definitely improved. This means that I’m getting sleepy at night more easily and also that I’m sleeping better during the night.
  • When the pain is sort of bad, I read as a distraction. When it’s really bad, I watch one of my favorite old movies. If the pain subsides enough after meds kick in, I’ll fall asleep in front of the movie. I’ve seen it enough times that I don’t mind. After an hour or two I’ll wake up and go to my bed (the tv is in the living room.) If the pain is completely unbearable, I don’t try to sleep. Some nights it just won’t happen, or at least not much, and that’s ok. I don’t feel bad about it. I just try to get back on track the next night.

You probably noticed that some of the things that work for me are pretty standard in any sleep advice lists, such as having a sleep schedule and avoiding computers before bed. Here are a few more I’ve read about that might be helpful if you’re having sleep issues. Of course, I’m not a medical professional, so definitely get advice from a professional if your sleep is a real problem.

  • Write a list of positive things that happened to you that day. This is good for clearing your mind and also as part of a bedtime routine.
  • Meditate.
  • Avoid alcohol, caffeine, and nicotine for several hours (at least) before bed.
  • Avoid naps during the day as much as possible.
  • Exercise every day if you can.
  • Time your exercise so that it works for you. This usually means avoiding exercise for a couple of hours before you want to go to sleep.
  • Consider who you’re sleeping with and what changes you might need to make. Ask a partner to avoid watching tv in the bedroom, insist your pets sleep someplace else, etc.

We all know that sleep is important for our bodies to heal properly, but that doesn’t mean that it’s easy to achieve. This is a really tough area for many of us. In fact, this post was inspired by the Twitter conversation by WegoHealth yesterday (#hachat) Check it out to see what others are saying.

So tell me, what works for you?


At a loss for a new PCP

August 26, 2013

Years ago I had a primary care physician (PCP) who I really liked. I saw her for several years and then she moved to a new practice. As much as I liked her, I didn’t want to follow her to her new practice, which was in a different hospital network and also a really lousy location for me. And so it began.

Next I saw someone else at that practice. He seemed good enough, but after about a year, before I really knew if he was going to work out for me, he moved to a new practice. His new practice was one I’d have loved to join, except for the location. Oops.

I asked around and a friend recommended someone. That lasted until my first illness. It was a horrible cold that wouldn’t go away. I lost my voice completely and had to write notes in response to the doctor’s questions. She examined me and they took x-rays of my chest. And then her office never called me back! Since I couldn’t speak, I had a friend call to find out what was going on, and she had to call several times. Goodbye PCP!

Another recommendation led me to my current doc. I’m not thrilled with her. At my annual exam, including gyno exam, she never even asked if I was sexually active. That was weird. When I went in for an odd infection in my hand, I didn’t like the way they handled it. But a few weeks ago, when a cancellation finally got me an appointment with a specialist I’ve wanted to see for a long time, she wouldn’t give me the referral that the insurance required. Why? Because I’m not in her hospital network! Apparently, it’s more important for the hospital to make money than for a patient to get the best treatment possible. So guess what? They lost me as a patient and won’t be getting any more of my money, even for the PCP!

And that brings me to today. I desperately need a PCP, because without the referrals that a PCP provides, insurance won’t cover any of my specialists. I’m now considering a practice that sounds good. It’s a teaching hospital so I’d occasionally be seeing residents. This has downsides, but there are probably plus sides too. It’s more expensive (the visits are covered by insurance but I’ll probably spend $10 per visit to park.) It’s not the greatest location. There’s always traffic to get down there and it isn’t as close as I’d like. Then again, how often do I really see my PCP? A few times a year? Sometimes less? And I haven’t come up with any better options because of the referral issues. I’m determined to find someone who will refer me to the doctors I want to see.

It shouldn’t be this difficult. I’m just looking for someone who has experience with autoimmune diseases, who is thorough, who won’t exhibit any prejudice towards bisexual patients, who won’t scoff if I tell them that I’m seeing a naturopath, and who will refer me to doctors at other hospitals if it is in my best interest. Why is that considered too much to ask for? Something is definitely wrong with our system.


Finding health solutions outside the doctor’s office

August 14, 2013

This month’s blog carnival topic over at Patients for a Moment really caught my attention. It’s being hosted by Getting Closer to Myself – go check it out!

There are a few questions I could have answered, and I’m choosing this one:

How has social media impacted your illness experience?

Anyone who has been following this blog knows that I only recently began to figure out what’s causing my various symptoms. But do you know how I’ve been finding answers? It sure wasn’t at the doctors’ offices! They were all pointing fingers at each other, saying it was someone else’s specialty and not offering me any answers. The real journey started with a book.

I was bored while all of my friends were at work, so I went to the library. I thought I’d check out the books about one of my symptoms because it had been a long time since I’d done that, and while I was perusing the shelves, a title caught my eye about hypothyroid symptoms. I grabbed the book and immediately started reading. That book led to another, and those led to web sites which connected me to Facebook groups. Suddenly I found an entire community of hypothyroid patients online, mostly on Facebook and Twitter and in other places, too. They were dealing with hypothyroid and a lot of the accompanying issues that I also face, like adrenal fatigue.

Being ill can be isolating in the predictable ways: spending days at a time alone at home, not working, and having to miss social events are of course difficult. But the thing that many people don’t realize is that it’s also isolating to be sick and not know why, which symptoms are attributable to which diseases, which symptoms are relevant and which aren’t, or what to do about it all. This can make a person feel very alone, because it seems that no one else understands. Finding books, blogs, web sites, Facebook groups, and Twitter chats of people going through the same thing makes me feel a lot less alone. But they’ve also given me hope because, for the first time in many years, I have treatment routes to explore! In fact, if it wasn’t for the Chronic Babe online support group (which sadly no longer exists) I would have never begun seeing the naturopath who cured my IBS and who has helped me in so many other ways over the past year.

Let’s face it, social media is far from perfect. Finding the right groups and accurate information can feel like looking for a needle in a haystack, but it’s possible. We have to watch out for scams and inaccurate information. There are still doubters. But for me, social media has been incredible. It has given me a community to turn to, answers to my questions, and the hope that I could improve. I can’t wait to see what happens with it next!