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

When a treatment actually works

September 24, 2013

I was really nervous at today’s appointment. I followed the doctor’s instructions, but did it work? What if it didn’t? What if my levels went up but not enough? The numbers ran through my head: 100 or more would be great! 70 would be ok, I guess. But what if it was only 50? What if it was lower? But first, let me give you a little context.

I’ve had low ferritin (storage iron) levels for as long as I can remember. I’ve been going through my old medical records, and the other day I found a low test from 10 years ago. I tried oral supplements, but they bothered my stomach. I tried different pills, but they didn’t work either. I tried eating more red meat, but that didn’t work. Doctors have said I should address it, but no one has sent me to the right specialist.

I’m anxious to move on to a new treatment for what I consider to be my biggest source of problems right now, which is my hypothyroid. The thing is, from what I’ve read, the hypothyroid treatments just won’t work well enough, and they could even cause problems, if my ferritin is too low. So I had to fix it.

The hematologist suggested I get iron infusions. Instead of taking pills of 30mg or so of iron, I’d get 2 infusions of over 500mg each. That’s a lot of iron! I figured I better try it, since nothing else had worked. As instructed I got the first infusion, waited a week, then got the second one, then waited 4-6 weeks to retest. Waiting was brutal, but I had no choice.

The doctor said that many patients begin to have more energy within a few days, and certainly within a few weeks, after the second infusion. Someone I know who did this said the same thing. She was excited for me that I’d feel so much better. But I didn’t. I felt nothing. I felt the same. So I worried that it didn’t work. And I kept worrying, because I had no way of knowing. Until today.

The range is 13-150 for women (though my doctor thinks this range is off, but that’s a discussion for another day.) For a woman getting her period, it should be around 70. For a woman with inflammatory issues, which I clearly have, it should be over 100. Before the infusions, my tests were anywhere from 7 to 26. The last was 22. Obviously 22 was not good.

And that’s how I ended up at the doctor’s office today, very nervous about my latest test results. Thankfully he had a cancellation, so I was able to worry for 9 fewer days than I’d originally planned. I sat in his office, waiting for the numbers to come up on his computer screen, thinking about all of the possibilities. Until today, I hadn’t realized how pessimistic I really was. The truth is, after all these years of illness and failed treatments, I guess I now expect treatments to fail. After all, that’s usually what happens. So when he told me the result, I was speechless: over 600! Wow! Even the doctor was shocked. He had said this could happen, but it’s very rare, and given my background he really didn’t expect it.

I’m a little worried about that high number, but the doctor assures me that my body will get rid of the extra ferritin on its own. Still, I’ll do my own research because I’ve learned over the years not to blindly trust doctors with my health. But still! Wow!

I think that this success has done three things for me:

  1. It has fixed my ferritin problem, at least for now (I may need another infusion in the future.)
  2. It has allowed me to move forward with my hypothyroid treatments.
  3. It has assured me that standard, prescribed treatments can work for me.

It will take a long, long time for that last one to sink in, but I hope it does. This is so huge! For the first time in a long time, a treatment worked. And maybe, just maybe, it can help me regain my health.

8 Comments | Educating, Expectations, Fatigue, Medication, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

How important is your health?

September 23, 2013

I’ve been trying to help D with his health issues. After getting really frustrated last week by what I saw as his unwillingness to try harder to fix things, it suddenly occurred to me: I was projecting my own values onto him. I needed to figure out his values. So I came up with a little exercise. I found it interesting for myself, so I wanted to share it with you, too.

All you need is a paper and something to write with, or someplace to type, or a recorder to speak your answers into, or whatever else works for you. Now, answer these 4 questions:

  1. On a scale of 1 to 10, with 1 being the worst health you can imagine and 10 being the best health you can imagine, how do you rate your current health? By “current” I mean recent. Use the last 6 months or so, and just average it. Be honest, now. What’s your current health?
  2. On the same scale, rate your goal for health, being realistic. Let’s face it, some of us will never be a 10, but still, we want to reach as high as we can. What’s your goal?
  3. On a scale of 1 to 10, with 1 being not important at all and 10 being more important than anything else in your life, how would you rate the importance of reaching the health goal you just set? Consider the many things you may or may not have to give up: your favorite foods, your closest friends, your home if you need to move to a new climate, your favorite activities, etc. How important is it to you?
  4. Now, list out everything relevant to #3. Be thorough. You may want to reference this in 6 months or a year to reassess your priorities. List it all.

What do you think? Did you learn anything? In case you’re curious, here are my answers.

  1. 5
  2. 8.5
  3. 9
  4. I’d be willing to give up anything except my family and friends. Everything else is fair game if it means improving my health.

I ran these by my parents and they seem to think that my first two answers are pretty realistic. Of course, it’s all guesswork, but they know me well. On the other hand, when I did this with D, I disagreed with his answer to the first question. We got into an interesting conversation about how his good habits are helpful, but they don’t override the problems that he has. You may want to run your first two answers by someone close to you, also. The perspective is really helpful.

What are your answers? How do you rate your health and what’s your goal? Are you there yet? If not, how important is it to you to get there? I look forward to reading your answers!

4 Comments | Educating, Expectations, Medication, Symptoms | Permalink
Posted by chronicrants

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