Sometimes I want someone to get as sick as me

October 17, 2013

I’ve always been a kind, generous, compassionate, empathetic person. I know that sounds like bragging, but it’s just the truth. I always want to help others and I never want anyone to feel sick or hurt in any way. A friend posted a picture on Facebook today of circus elephants and all I could think was, “Those poor elephants!” So you can imagine how hard it is for me to admit that sometimes I want others to get as sick as I am.

For a long time I’ve fought this. I’ve tried to tell myself that I didn’t really mean it when I thought this way. But that wasn’t true. The truth is, there are some people who I want to feel bad. I don’t feel this way about all people, of course, but it’s still there.

But when someone says that all people wanting prescription painkillers are just trying to abuse the system, I want them to feel horrible, chronic pain. I want them to be in pain every single day, horrible pain, can’t-think-properly pain, want-to-cut-my-arm-off pain. I want them to know it will be for the rest of their life. Then maybe after a few weeks, after they’ve had to deal with the physical, emotional, and social fallout, then maybe they can feel better.

When someone suggests that I should really be well enough to work, that a little exhaustion can’t be that bad, I want them to experience my exhaustion. I want them to miss friends’ weddings, fun outings, living life, having a job, feeling young, feeling independent. I want them to worry about ever dating, getting married, having children, having pets. Then after they’ve fully experienced the horribleness of it, then maybe they can get better.

When politicians say that the already underfunded Social Security Disability system should be cut back because of fraud, I want them to get so ill that they can’t work, apply for benefits, get denied, appeal, get denied again, and then question how they will pay rent, buy food, and live in general. After they’ve fretted and suffered for a while, then I suppose they can get better.

When someone says that we don’t need healthcare reform in this country I want them to get really sick and try to get care. I want them to see that even with health insurance, it can be very expensive. I want them to see that health insurance doesn’t cover it all. I want them to see how hard it can be to get health insurance and how easy it can be to lose it. I want them to spend dozens of hours fighting with insurance companies instead of using those hours to get well. Then they can get better.

When someone judges me, thinks that I’m not too sick to do the things they can do, thinks I shouldn’t be out of work or “acting” sick, I want them to get exactly what I have. I want them to feel the exhaustion, pain, and fear, all while “looking good.” I want them to be judged and to have to defend themselves constantly. I want them to break down crying because it’s all too much. Then I suppose they can get better.

You see, I don’t want these people to feel as sick as me forever. I’m actually not all that vindictive. But I want them to feel it for a while so that they understand. So that they have some compassion. I just want understanding and I really don’t think anyone can understand unless they’ve been through it.

I hate to admit all of this. Today was the first day I admitted my true feelings to myself. Maybe it makes me a horrible person, maybe not. But it’s how I feel and I won’t pretend otherwise anymore.

19 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

Please don’t suggest shortcuts unless you’re going to help pay for them

October 16, 2013

People like to offer advice. They want to help. I get that. I want to help others, too. But when the advice involves money I don’t have, and I point that out, arguing the point really doesn’t help.

Example 1: “Why don’t you order groceries to be delivered?”

This is suggested to me a lot. Yes, that would be great. It would save me time and energy and effort and the pain of walking and driving and reaching and carrying. Perfect solution. But it’s expensive. Only the more expensive grocery stores offer this service, and then they charge extra for this service. I just can’t afford it. I point this out to people and too often they try to argue that it would be worth it anyway. They don’t seem to understand that I am living off of disability payments that don’t cover all of my expenses as it is, and that might be cut off any time the insurer feels like it (well, that’s essentially the case.) So yes, grocery delivery would be incredibly helpful, but that doesn’t mean that it’s an option for me. I wish I was. I really do. But it’s just not.

Example 2: “Why don’t you use a laundry service?”

Wow, that sounds nice. Someone else would wash all my clothes and linens. I’d just have to prepare them and put them away. I’d love that! No more lugging everything down the hall, into the elevator, to the basement, and into the machines, then returning later to put everything in the dryer, then returning again even later to lug it all back up to my apartment. I would even have to fold clothes. It sounds heavenly! But I balk at the laundry prices I’m already paying: $2.50 to wash each load and $2.50 to dry each load, which is why I let some clothes dry on racks in my living room now instead of paying for the dryer. If I have trouble paying those prices, how am I supposed to pay even more to have someone else do my laundry? People try to argue that it’s not that much more to pay someone else, and it will save me money on detergent, etc. Um, I don’t pay that much for detergent (just how much do you use?) Besides, if the current cost is too much, a higher amount isn’t magically ok. It just doesn’t work like that.

Example 3: “Why don’t you order in for dinner?”

Oh, don’t get me started. It is so much more expensive to buy a restaurant meal than to cook at home. Yes, it would do wonders for saving energy and reducing pain on the days I need it most, but that doesn’t mean I can afford it! Plus, it’s just not healthy – I can’t be sure what’s in those foods, and my health is the most important thing. I have a list of easy meals to make from ingredients I always have on hand and I grow the list whenever I can. Failing that, when I feel well enough I often cook in large quantities and freeze the extras, so I can always pull something out of the freezer. People try to argue that it’s worth it to order in. Maybe it is to them. Sure, you with a job and a steady income might eat out sometimes. Good for you. But you can’t assume we can all do it. There are financial limitations, and this is one of mine.

There are so many more examples like this. I know people mean well. They really do. And I don’t mind the suggestions. But when I say I can’t afford it, that means I can’t afford it. Trying to suggest it’s “worth it” just doesn’t work. So my new response will be that if they think it’s that important, they should be offering to cover the cost for me. If they won’t do that, then the conversation is over. Kaput. Finished. I live in the real world, and in the real world I’d rather pay for medical care than for grocery delivery. Yes, that is a choice I must make. It’s a personal choice. And I’m certain I’m making the right one for me.

6 Comments | Decisions, Educating, Frustration, Kindness, Limitations, Rants, Support, Thoughtfulness | Permalink
Posted by chronicrants

Should I try to trust doctors?

October 10, 2013

I’m in a bit of medical flux at the moment.

I have a naturopath who’s very helpful and knowledgeable, but thanks to absurd politics, naturopaths aren’t licensed in Massachusetts. That means she can’t order blood tests or prescribe medications. Great. I haven’t had a primary care physician (PCP) that I’ve trusted in many years, and in hindsight, none of them were very good anyway, and some even did harm. I have never had a “good” PCP. I have some specialists who are good, but they aren’t in the specialty that I need right now. In a few weeks I’ll see a new PCP, but I’ve never gotten any value out of PCPs. Still, they are necessary for insurance referrals, so I will see the PCP and grade him based on his willingness and ability to refer me to good specialists. And when he does refer me, should I trust the new specialist?

After many years of bad health, I’m finally ready to try new treatments that could really help me. But these are all based on research that I did myself. I then ran that research by my doctors and naturopath and they all agree this is the way to go, but I had to figure it out for myself. I no longer expect a doctor to give me any answers. That means that right now, I am only looking for doctors who are willing and knowledgeable enough to implement the treatment plan that I have designed for myself, and to help catch any potential problems and fix them.

The thing is, what if something new comes up that I haven’t already researched? I just can’t trust a doctor to catch it and treat it properly. It could be big or small, but I won’t trust them. I know that trust is essential, but I just don’t have it for most in the medical field. I have seen my naturopath quite a bit in the last year+ and I mostly trust her, but not 100%  So then why would I trust someone new?

I don’t trust easily. That goes for friends, lovers, medical practitioners, and anyone else I get close to. I don’t give out trust; it has to be earned. My friends have all earned my trust. If they hadn’t, I wouldn’t consider them friends. So have my lovers. If they hadn’t, I wouldn’t have slept with them. But I don’t have the luxury of visiting doctors a bunch of times and letting them earn my trust. Most of them don’t seem interested in earning it, and the insurance won’t pay for it (nor will my bank account.)

The truth is, I have been screwed over by doctors, health insurances, and medical facilities so many more times than I have covered in this blog. Tests I needed weren’t run. Abnormal test results were ignored. Surgery was performed unnecessarily. I was blamed for my own health problems. I was ignored. I was embarrassed. I was belittled. I was outright lied to. Necessary referrals to specialists weren’t given. Important medications were denied. It’s not that I won’t write about it all, it’s that I can’t. I can’t even remember it all. There’s just too much.

So after all of that, how can I be expected to trust a new doctor? But then, what other choice do I have?

By the way, I set out to write about what I am looking for in my new doctors. I need to think about this before I see them in a few weeks so I really tried to come up with what was most important to me. I couldn’t come up with a damn thing because no matter how I thought about it, it always came back to the same problem: I wouldn’t trust them to help me.

8 Comments | Decisions, Expectations, Frustration, Healthcare, Insensitive, Medication, Rants, Support | Permalink
Posted by chronicrants

My pajama radius

October 8, 2013

I was watching How I Met Your Mother the other day and they did a joke about Marshall’s “underpants radius.” Ted explained that, “Everyone’s got an underpants radius. For most of us, it’s the distance from the bedroom to the bathroom, but as your self-esteem gets smaller, your underpants radius gets bigger.” Apparently, as Marshall’s unemployment dragged out, his underpants radius increased to laying on the couch, to getting the newspaper, and eventually to going to a restaurant in his underpants.

That got me thinking about my pajama radius.

I live in an apartment building. I also live alone. It used to be that I wore nothing more than underpants between my bedroom and my bathroom, but I covered up to walk to another part of the apartment. Occasionally, as I was getting ready for bed I’d realize I’d forgotten my book or something in the living room. I sleep naked. I used to cover up to get the book, but after a while I just covered my breasts with my arms and ran in, keeping the lights off. Eventually I didn’t bother to cover up or run, but I kept the lights off. Then I’d need to get something in the kitchen after my morning shower but before I’d gotten dressed, and I’d just walk in naked, even during the day. Even with the shades up. But hey, this was all in my apartment and it was my body so it was ok, right? It was also when I was feeling fairly healthy.

A funny thing happened when I got sicker, though. I began to spend a lot of time in my pajamas. They started to feel like “real” clothes. It used to be that when someone came to my door and I was in pjs, I’d throw on a bathrobe or a sweatshirt before I’d answer their knock. Now I don’t bother. Then I started wearing pajama bottoms to take out the trash in the evening. As I felt even worse, I’d just wear full pajamas to take out the trash. At some point, wearing pajamas to check the mail in the lobby seemed ok. I began to have visitors while I was in my pjs. And then last week, I found myself wearing my pajamas as I walked my friend to her car across the street so that I could get back my parking pass.

When did this happen? I know it’s been in the last few years that my pajama radius has spread. It seems to come from two health-related things: quality and quantity. Sure, as my health gets worse I wear my pjs more. But also, the longer this goes on, the less I care. There are more important things in life to worry about than whether a neighbor sees me in my pjs. I don’t care if a neighbor sees my hair messed up or my boobs swinging freely under a pajama top. If I let them see me when my insides feel like crap, why should I care if my outsides look like crap, too? Society says I should care, but society averages towards feeling healthy. I do not.

I suppose the only question is, does this matter? I’m guessing it does. But I just don’t care.

8 Comments | Decisions, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

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