Complaints from a so-called non-complainer

February 24, 2014

My friends often comment on how amazed they are that I never complain about my health problems. I talk about my problems, of course, but I don’t complain about them. I just state everything matter-of-factly.

Maybe that’s why I was greeted by so much silence this evening. I was talking to a friend on the phone who knows about my health problems. In fact, he’s seen me at some of my worst moments. But he’s never heard me really complain about it. He made a comment about the career-ending injuries that professional athletes deal with and how they entitle the athletes to large salaries, and that sent me off on a big rant. I finally calmed down, but then started up again a few minutes later. The thing is, for me, it’s all about timing.

I get frustrated by all of the bullshit I have to deal with. Anyone would. Just look at what I wrote the other day. So yes, I do get upset by this stuff, but I rarely complain to my friends or family. Instead, I think it through. I let it out in small doses by venting about specific issues when they occur, not complaining on end about the situation in general. I write about it on here when I need to. I use my energies to at least try to educate people. And that’s enough for me.

Normally, after a day like today, I wouldn’t have called any friends. I had dealt with a lot and needed to be reflective, so I wasn’t in the mood to talk to anyone anyway. But this friend and I don’t talk often, so when he called and I was in the middle of doing healthcare crap, I said I’d call him back. If only I’d paid more attention to how I was feeling.

I guess that after a day like today, most people would be frustrated. I got 19 things crossed off my to do list today. That’s practically a record for me! I had set aside the day for this. I had actually managed to sleep relatively well and the sun was shining, so that helped a lot. I mixed up easy things and harder things. I didn’t do anything too physically demanding. And I just got it done. And of those 19 things, 3 involved helping family members with their health, 6 had nothing to do with health, and 10 had to do with my own medical and insurance issues. That’s absurd! I spent the day tracking down medical records, making appointments, and researching medical marijuana options. I emailed with my lawyer, texted with a friend about her medical marijuana prescription experience, and left messages for doctors. Sure, I took 30 seconds to renew my library books online. Then I took another minute to request a library book online. Those were quick and easy. The whole time, my computer was running a backup program in the background. That was another item to cross off my list. But the rest of the day, at least the parts that I wasn’t resting, were all about medical shit.

The good part was that I got everything done except the appointment for the medical marijuana prescription (I’m still bracing to spend hundreds of dollars per year for the prescription, in addition to the cost of the marijuana itself, but what choice do I have?) I’m hugely relieved that the rest is done. At least, the rest of today’s list is done. I still have more to do later in the week. And that’s just it. It’s never-ending. And so much of it is unnecessary. I’m spending hours and hours dealing with insurance bullshit and red tape and doctors who won’t run tests because the insurance companies pressure them not to and doctors who won’t prescribe medications because they aren’t “conventional” even though they’ve been proven to work. Who wouldn’t be frustrated after months, years, ages of dealing with that?

So my poor friend called me on exactly the wrong day. I needed to get out my frustrations, and since I couldn’t do my relaxing activities (tv, reading, crochet) and think it through, he got the brunt of all of that built-up anger. And while I’m glad that my friends don’t see me as constantly burdening them with my complaints, it’s also good for them to understand just what I’m going through. Because when they ask what’s going on in my life, the truth is, it’s this.

3 Comments | Educating, Expectations, Frustration, Healthcare, Isolation, Limitations, Pain, Rants | Permalink
Posted by chronicrants

Orbiting the doctor planets

February 22, 2014

“Can’t you just take a pill”?

“Yeah, right.”

We all hear this. But for me, there’s no cure. The best I can hope for is a combination of treatments that might help. I’ve made a lot of dietary changes. Thankfully, I can do those on my own. I’m also fortunate to be able to research medications and supplements. If I just listened to my old doctors, I’d be much worse off. Instead, I’ve seen a lot of improvement. Unfortunately, I still have a long way to go.

Because of my research, I know what I want to try next. I just don’t know how to get it. Sound familiar? Figuring out what to try was hard enough, but this is even more frustrating. I want to try adding another medication to my current one. It’s a very common combination in some areas, but unfortunately not a lot of doctors around here do it. Actually, that’s not true. Plenty do it, but they don’t take insurance and they cost a lot of money. The doctors that take insurance instead tend to prescribe med X, which is more profitable to the pharmaceutical companies. They buy into the hype from the pharma reps, and that’s all they offer. It took me ages to get med A, and now I’m stuck trying to get med B.

Dr. P prescribes med A a lot, actually. I was lucky to find him. Unfortunately, he doesn’t usually work with med B and he hasn’t been returning my emails. Dr. D could potentially be helpful with this, but he hasn’t returned my last three phone calls about a different, simpler matter, so I can’t really trust him with this. Dr. H works with med B a bit, and has been willing to prescribe it in the past. Unfortunately, he doesn’t believe in med A, and would want to combine med B with that with med X, which I’d rather avoid. I was on med X for 9 years and was very sick. I don’t want to go back. Dr. S thinks I should try something else first, but she understands my reasoning for this, and is willing to support me. Unfortunately, in Massachusetts naturopaths aren’t allowed to prescribe medications, so her support only goes so far.

I’m so lucky to have this many medical professionals to turn to, and yet none of them are able to help me! I can’t see spending thousands of dollars per year for a doctor who isn’t covered by insurance, but I’m feeling like I’m running out of options. The doctors all seem to be clustered together and I’m circling them, unable to find a way to make contact and have a reasonable conversation where we all speak the same language.

My friends try to listen sympathetically when I talk about this bullshit, but the truth is that they don’t really understand, and I don’t blame them. After all, who could possible understand such an absurd system if they don’t have to deal with it directly? I wouldn’t either. But in my current situation, I have no choice. So I’ll spend the weekend feeling annoyed and pissed off and frustrated, and on Monday I’ll go back to making phone calls and trying to get in touch with these moving planets that I’m forced to deal with. Grrr.

15 Comments | Decisions, Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

Looking so hard for a good treatment path

February 9, 2014

At first I titled this: “Looking so hard for the right treatment path” but I’m not so sure there’s just one right path. And even if there is, I might not be ready for it; I might need to take a bunch of small steps before I’m ready for a bigger one.

Sometimes there are fairly clear treatment options. If you break a leg, you probably need to get it set in a cast. If you have an infection, you’ll probably take antibiotics. If you’re allergic to peanuts, you won’t eat peanuts. But sometimes it’s not so straightfoward.

I’ve written before (and also here and here) about having trouble choosing treatment methods. This is definitely not a new problem for me! But once again I find my path blocked and I’m not sure which way to turn.

I could turn in the direction of medication changes. I could switch to a different brand of my current thyroid med, change the dose of the current med, or switch to a synthetic version of the med.

I could turn in the direction of supplements. A lot of hypothyroid patients swear by the efficacy of iodine. But just as many others say it made them worse. Or maybe there’s a different supplement I should try.

I could turn in the direction of dietary changes. A lot of autoimmune patients say that the Paleo diet helped them put their illness into remission.

I could turn in the direction of other specialties. Maybe I’ve done as much as I can for my thyroid at this point, and instead I should be focusing on other areas.

I could turn in any one of those directions, but I can’t be sure which is best. The doctors disagree. None of the treatments I want to try are “traditional” methods, at least not these days. The literature in inconsistent. Every patient swears by one method while another swears against it. I know that I should only try one thing at a time, but where should I begin?

It’s frustrating, so frustrating, to feel lousy and not know what to do about it. I feel like a broken record, but that’s just what I’m dealing with again and again and again.

The good news is that I will try something. It might work or it might not work, but at least I’m going to take action. For me, that’s better than being passive, at least. I just hope I don’t make things worse. I guess that’s why I research everything so carefully. Now, to figure out what to try next….

6 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Isolation, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

I don’t have plans but I still won’t go out with you

December 29, 2013

I think that when most people get an invitation, they accept unless they have other plans or expect to have other plans. Sometimes they might need to schedule a day to just rest and take care of personal stuff. I used to schedule a “me” day Sunny Dayabout once every month or two so that I could relax, read, watch tv, answer emails, pay bills, etc. But things change when you have chronic fatigue.

My mom wanted to go shopping today. Since money is tight for me, she’s buying me a new winter coat for Chanukkah (thanks Mom!) Scheduling-wise, this seemed like a good day, but I’m tired and in pain and there’s just no way. So I told her that and she understood.

Sometimes the person who wants to get together is a friend I don’t know as well. They don’t ask it as “Do you want to go out tomorrow?” but instead “Are you free tomorrow?” or even “Do you have any plans?” The connotations are the same and they’re all socially appropriate, but for me they’re very different questions. No, I don’t have plans, but that doesn’t mean I’ll get together with you. I might want to, but I just can’t. It’s easy to turn down the invitation once, but it’s harder to do that over and over with someone who doesn’t understand the situation. Sure, I could lie and make up plans, but I don’t do that except in extreme circumstances. My health issues are hard enough; I’m not about to juggle lies on top of everything else. Still, it’s hard to get people to understand the validity of, “I’d love to get together but I’m going out two days before that so I won’t be able to go out again so soon.” To most people, that just doesn’t make any sense at all.

Of course, then there’s the awkward, “Yes I’m free, and yes I want to get together, but only if you come to my place.” That might sound nice to some – I’m inviting people over, after all. But the truth is, I ask them to bring their own meals because I don’t have the energy to cook for others; I barely have the energy to cook for myself! I don’t “entertain” but instead stay on the couch while we talk or play a game. Since many of my friends have little kids, coming to my place isn’t possible if they’re busy caring for the little ones. Plus, so many of us get around on public transportation and getting to my place can take an hour or more each way for some friends. A good compromise might be to meet up in the middle, but if I’m asking them to come to my place it’s because I can’t do that, so then I’m asking them to spend a whole lot of time traveling to see me. This is ok from time to time, but not every single time.

For the close friends and family, this is all ok. Sure, it’s cumbersome and annoying for all of us, but they understand. They know that when the sun is shining and they’re at the park with their kids, I’d so much rather be with them than sitting at home browsing the web. They know that I’d like to invite them to dinner and actually provide it. They know I will gladly go to their place on the few days that I can. But for everyone else, it’s a bit harder. I’ve noticed that I’m getting fewer invitations these days. When someone gets turned down over and over, I guess they feel there’s no point in continuing to invite me. I’d probably feel the same way if I was in their place. Still, I’m choosing to focus on the people who’ve stuck around. Those are the true friends who I really want to spend my time with. And if I got my health back tomorrow (if only!) then those are the people who I would continue to spend time with.

So instead of shopping for a new winter coat to replace my old, torn one, I’ll be writing blog posts, reading blogs, watching tv, and reading my library book today. It’s not great. Actually, it sucks. But I don’t feel that I have a choice. I’m just hoping I’ll be able to go out tomorrow, instead. I’ll be keeping my fingers figuratively crossed both for me and for you and we’ll be able to get out at least a little bit this week.

2 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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