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.

4 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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.

2 Comments | Expectations, Frustration, Healthcare, Limitations, Medication, Rants | Permalink
Posted by chronicrants

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!

Leave a Comment » | Educating, Expectations, Healthcare, Isolation, Medication, Raves, Support, Symptoms | Permalink
Posted by chronicrants

The eny, meeny, miny, moe method of choosing a treatment

August 9, 2013

When a doctor presents multiple treatment options, my favorite question to ask is, “If I were your

Too many pills!

Too many pills!

sister/daughter/best friend, what would you suggest I do?” This usually makes them stop and think about things in a slightly different way. I preface it by saying that I know it’s ultimately my own decision and I won’t hold them to whatever they say. This has produced some interesting responses over the years.

Right now, though, that isn’t working. Right now I’m choosing among treatments in different specialties, so there’s no one doctor (that I know of) who’s familiar with all of them. I did ask the hematologist this question yesterday, which is how I decided to do iron infusions. But maybe I shouldn’t? Another doctor prescribed hydrocortisone (HC) for my adrenal insufficiency but my naturopath thinks I should keep taking Isocort. That doc isn’t familiar with Isocort. But then, I’ve also received a new thyroid-related prescription, NDT. I can’t do all of these at once, and maybe I shouldn’t do all of them at all!

It’s generally agreed that the thyroid can’t heal until the adrenals are properly supported, so if I’m going to do the HC then I need to do that before the NDT. Some say NDT won’t work if the patient is iron-deficient, so I guess I’d have to do that first. But again, that’s if I do these treatments at all. They all have risks of side effects. What if I do the iron infusions first and have some bad effect and it takes me a long time to recover, and that makes me put off the HC and NDT, which are both promising? Of course, the HC has lots of potential side effects that I’d really rather avoid, too.

It’s overwhelming. This is my body. This is my health. This is my life. I don’t want to fuck around here. It’s too important to just randomly guess. And yet, sometimes I feel like that’s all I’m doing anyway. Right now I’m looking at three new treatments. Those are in addition to my current supplements and my complicated diet. Maybe one or more of them will work. Maybe they’ll make me better. Maybe they’ll make me worse. But I have to try, right? Yes, I have to at least try.

Leave a Comment » | Decisions, Fatigue, Frustration, Healthcare, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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