“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!

6 Comments | Educating, Frustration, Insensitive, Intrusions, Kindness, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , | Permalink
Posted by chronicrants

How to dress for a new doctor

July 30, 2015

There was a time when I never thought for a second about what to wear to doctor appointments. I just wore whatever I was going to wear that day anyway.

Then for a while I thought about it in small ways. Are the sleeves easy to push up for a blood draw? Is this shirt loose enough to get a stethoscope underneath easily? Is the outfit fast and easy to get off and back on? 2015-07-30 10.41.51

At some point, things shifted. I still think about those small things, but now I have to consider what my appearance says to the doctor. If I dress too slovenly, they’ll think I don’t care about myself. Or they’ll just have an unconscious dislike for me. If I dress too well, they’ll think I’m faking it when I talk about my symptoms. I don’t want to look bad, but I don’t want to look too good, either.

I’ve heard from friends with chronic illness that they have this same problem. They want to look decent, but maybe they don’t put up their hair or they skip the makeup or they wear a t-shirt instead of a button-down. And like me, they feel ridiculous for worrying about what they wear when what really matters is their health, but they also know much one will be impacted by the other. So they plan carefully.

I’m seeing a new doctor today. I’m excited to see him. I scheduled this appointment 2 months ago, I wrote up my notes, I have my list of questions, I read the book he wrote and I’m bringing it with me, and I’ve got all of my medications and supplements in a bag that I can bring with me so that he can see exactly what I’m taking. I’m ready. Except for my clothes. I’m still in my pajamas because I just don’t know what to wear. How absurd!

Do you worry about what to wear to appointments? Do you feel it affects how your doctor perceives you and treats you? What has your experience been? Please let me know in the comments!

Leave a Comment » | Decisions, Expectations, Frustration, Healthcare, Insensitive, Rants | Tagged: , , , | Permalink
Posted by chronicrants

The problem with SSDI’s trial work program

July 28, 2015

When you’re on SSDI (social security disability insurance) the presumption is that your disability prevents you from working. Ok, I get that. But what if you want to return to work part time or full time? Ah, that’s and interesting process.20120809_220808

Everyone gets a different amount of money through SSDI. The formula is based on how much you paid into the system, and that in turn comes from the salary you earned and over how many months you earned it. You might be getting $900 per month or $1800 per month. If you’re on SSDI for more than 2 years then you’re eligible for Medicare, which is health insurance. You’re also more likely to be eligible for other benefits.

Now, what happens if you start doing some work? Well, at a certain point the SSA (Social Security Administration) decides that you’re able to support yourself. That point is a set number. It’s not a percentage of your benefit. Nope. It’s a set number: $1090 per month right now (this can change each year.) So if your benefit is $900 and you start earning $1100 then you lose SSDI and Medicare, but that might be ok with your extra income if you’re earning $1100 every month. You might only earn it occasionally, though (more on that in a bit.) But if your benefit is $1800 and you earn $1100, then you lose SSDI and Medicare and, unless you have unearned income from some source (like a spouse, alimony, or investments) then you’re probably screwed.

That’s how I feel now: screwed. I’m ready to do some small amounts of work, which is exciting in and of itself! I recently earned around $1100! This is very exciting! If it was all in 1 month, though, it would count towards my return to work trial period of 9 months total. Those total 9 months are spread out over 5 years, so I could work for 2 months per year, and still lose my benefits. That’s not good! Luckily for me, it was spread out over 3 months, at an average of under $400 per month. What a relief!

But wait, isn’t there something wrong with the system if I feel relieved to earn less money? Shouldn’t the goal be to get me back to work so that I don’t need benefits?

What if I make more than $1090 per month for 3 months this year? Then what if the same thing happens again next year? I’d stop working altogether so I wouldn’t risk going off benefits. I can’t afford to have 0 income, and I definitely can’t afford to lose my health insurance!

Instead, the system should encourage me to work part time with the hope that I would build up to more part time work or even full time work! The trial work period should only cover a short timeframe, like a certain number of months worked in a 1 or 2 year period. There should be a grace period for Medicare.

But with the current setup, I’m scared to attempt to go back to work. What if I try to work, lose my benefits, and then fail to continue working? Yes, there’s a grace period where I can get back on benefits, but it’s short. And I’m scared. It took me more than 2 years to get on SSDI in the first place. I can’t take a chance on losing it.

And that’s why the system doesn’t work.

Have you felt the same way about SSDI? How do you handle it? Do you hold back on the amount of work you do in order to stay on benefits?

8 Comments | Expectations, Frustration, Healthcare, Insensitive, Job, Limitations, Politics, Rants | Tagged: , , , | Permalink
Posted by chronicrants

No! I’m not using my health as an excuse!

June 8, 2015

Somehow I had a strange insight when I was a kid. Well, the insight wasn’t strange, but having it at such a young age is probably unusual. I realized that if I ever used my pain as an excuse to get out of doing something when it really wasn’t a problem, no one would ever trust me again.

Maybe that’s why I felt so defensive today when someone accused me of that.

Ok, I’ll be fair. She thought I was doing it in an honest way. We were talking about her upcoming move out of state, and I said that I’d love to try moving someplace for just 6 months. I’d store my things in my parents’ basement and rent a furnished apartment near the ocean in Maine for 6 months, just to see how I liked it. She loved the idea, and pushed me to consider it. I pointed out that I couldn’t even think about it until my health was better. She asked if I was using my health as an excuse because I was really just scared to try it.

So I went on the defensive. I don’t talk bluntly about my health problems, but I’d had a recent setback that she hadn’t known anything about, and I was in no mood to have anyone suggest that being away from my doctors for 6 months was a problem only in my own mind. I told her something that she probably hadn’t realized: that while none of my health problems are fatal, that’s because they’re not fatal with proper treatment. But without proper treatment, yes, they could kill me. Ok, I didn’t happen to mention that death would take years, maybe decades, but that’s beside the point, right? And in the meantime, things could get awfully bad.

I’ll admit, I’m more fearful than I used to be. I used to jump at chances. Now, I’m weary. But who can blame me? So yes, I don’t take as many chances as maybe I could, or should. But then again, I take a lot of small risks on a regular basis, so who’s to say what’s right?

As for moving away for 6 months, I know that’s a risk I shouldn’t take. I don’t have a single doubt in my mind. What if I’d been away a few weeks ago when things went bad? I wouldn’t have gotten my blood work done, which means I wouldn’t have known to adjust my thyroid meds. I was having horrible symptoms of adrenal insufficiency, but I didn’t realize it until my naturopath pointed it out. My pulse was low, but I hadn’t checked it. My blood pressure was so low that she couldn’t even hear it. She tried three times. A machine wouldn’t have been able to read it either, so I wouldn’t have known about that. And if I was in Maine, I wouldn’t have visited my naturopath and started on folate (which I should have done a while ago, to be honest.) I would have gotten worse and worse until I couldn’t properly care for myself. Eventually, my parents would have had to come get me and take me to their house. I would have been bedridden. Now, I’m already seeing a bit of recovery. If I hadn’t caught it early, recovery could have taken months or years. So I have no doubt.

Even so, it sucks to have my judgment questioned. I know it’s hard for health people to understand this. As I pointed out to my friend, we’re taught that when you get sick, you take medicine and then you’re better. But for some of us it doesn’t work that way. We take the medicine and we stay sick. Sometimes we get even sicker. If we’re lucky, we stabilize. That’s what happened to me, I stabilized. Then that went to hell. I’ll probably never be stable. I may never be able to move away from my doctors for 6 months. I’m ok with that. I just need my support network to be ok with it, too.

2 Comments | Decisions, Educating, Fatigue, Frustration, Insensitive, Limitations, Medication, Pain, Rants, Support, Symptoms | Tagged: , | Permalink
Posted by chronicrants

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