How do you rate yourself?

March 14, 2013

Self assessment is never easy, and it’s certainly not accurate. This can be true for the way we look, the way we act, and the way we speak. Lately, I’ve been thinking about it in terms of my health.

First, there’s the vague stuff. If I’m feeling good on the day I see the doctor, I’ll focus on my progress. If I feel bad, I’ll focus on Pain scalethe setbacks. That’s just natural. At 3pm Tuesday the doctor may make one assessment of me, but at 11am Wednesday it would look completely different. It’s hard not to have a selective memory based on mood, especially when brain fog is already an issue.

Of course, that also doesn’t account for the inability to differentiate periods of time in my mind. How have I felt in the last 2 months compared to the 2 months before? Are they kidding? In the middle of March, I’m supposed to compare January to last November? On my best days before brain fog I could sometimes use association techniques to make a wildly inaccurate comparison. But now? Forget it!

Then there are the more specific ratings, like the pain scale. We all know the pain scale, right? You tell your doctor how much pain you have, with 0 being no pain and 10 being the worst pain you can imagine. They always seem to ask about the pain I’m experiencing that day, even though that day could be an aberration. And talk about subjective! I explained to my rheumatologist the other day that the pain started when I was a kid. After all these years, after experiencing new levels of pain, after gaining the perspective of an adult, of course my pain scale has changed. My 17-year-old pain 8 is now only a pain 6 or so. I report a lot of pain 2 and pain 3 days now, and even some pain 1 days, but the same pain 15 or 20 years ago would have rated at 4 or 5. There’s no good way to reflect that in the medical record. And there’s no objective test for it.

I’ve heard of people using a similar scale for fatigue, but my doctors haven’t suggested it yet. For that, they ask about how much activity I can do in a day and how I feel afterwards. Again, there’s a lot of selective memory there. I don’t like it, but I can’t help it. I’m only human, after all. And it’s just all too easy to forget about the walks I accomplished, or to ignore the days I wasn’t able to leave the house.

I’ve had three medical appointments in the last week, and I think they each got incredibly different views on my health. Sure, it’s partly because they each know different things about me, we have different histories, and they focus on different things. And it’s partly because of the time of day I saw each, the distance I had to travel, the stress surrounding the visit, and how much activity I had done in the days prior.

As always, it comes down to the idea that we just need to do our best. And that’s what I’m doing. I just hope it’s good enough.

 

1 Comment | Educating, Fatigue, Gastrointestinal, Healthcare, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

The anatomy of a trip to the grocery store

March 4, 2013

Ask a “healthy” person what’s involved with getting groceries, and they’ll probably say: “Go to the store, pick items off the shelves, put them in the cart, pay, go home.” Those of us with pain, fatigue, cognitive, and other issues know that it’s not that simple.

Groceries

Some people use grocery delivery services and some have spouses, parents, friends, or others who get groceries for them. For the rest of us, going to a store for food is inevitable. I just got home, and was amazed, as I often am, at how exhausting it can be. Here’s my own breakdown. It’s different for everyone, but I think it might be worth passing this along to your able-bodied friends who don’t seem to understand the difficulties you deal with. This may open their eyes a bit.

Buying groceries:

  1. Let’s assume I’m already dressed. The first thing is to sit down, put on shoes, and stand up again. Oy. Next, coat, scarf, and other wintery layers. In the summer, carry 1-2 water bottles.
  2. Walk down the hallways, down the stairs, and outside.
  3. Spend a couple minutes trying to remember where I parked my car. Beep the alarm to help find it. Before the memory issues, this was rarely a problem. Now it’s happening more often.
  4. Climb into car.
  5. Drive to grocery store.
  6. Circle the lot looking for a decent space. On bad days, I must be as close as possible to the door. On better days I can be a bit further back. It’s been a long time (years) since I’ve had a day that I could park at the back of the lot. Also, it’s better not to be too close to the next car on the driver’s side if I’m going to have trouble getting out of the car this day, or if I’m going to have trouble controling the swing of my door. My grocery definitely needs more handicapped parking spaces!
  7. Get out of car.
  8. Open back door and bend over to take out shopping bags.
  9. Walk into the store.
  10. Get a cart. Try to get one of the carts that’s smaller and therefore easier to push and manuver around the store.
  11. Check grocery list. Thankfully, I can keep mine on my phone now so I never forget it at home.
  12. Walk up and down the aisles, careful not to forget anything. Going back takes too much energy.
  13. Check grocery list. Memory ain’t what it used to be.
  14. Pick up items, sometimes having to crouch down (ouch!) or reach up (are you kidding me?)
  15. Examine items to be sure they don’t contain gluten or other bad-for-me ingredients.
  16. Lean over to place items in the cart. Anything unbreakable just gets thrown in. Bending is only for items that need more care.
  17. Mentally calculate the weight of all items in the cart. Only get more groceries if I think I can carry them to my apartment later.
  18. Check grocery list. Damn memory!
  19. Realize I forgot something after all. Go back.
  20. Repeat 11-19.
  21. Exhausted now. But almost done (sort of)! Head to checkout.
  22. Unload cart. Bend and lift. Bend and lift. Bend and lift. Heavy items in left hand, lighter items in right. Unless right is having a great day, then medium items in right, too. Pay attention, now, I don’t want to hurt later.
  23. Wait for cashier to scan each item.
  24. Insist on packing my own bags. I know from experience that the workers always pack my bags too heavy, since I look healthy, and then I can’t manage them. Lift each item and place it in the bag.
  25. Lift the bags into the cart. Oooh, feeling that.
  26. Pay the cashier. Most days I can pull out my credit card and sign the screen without a problem. There were times I couldn’t even hold a pen, though, which made things more complicated.
  27. Walk out to the car.
  28. Lift bags from the cart into the car. Not good.
  29. Return cart to store front area. No, neither of my groceries has a cart return in the lot.
  30. Trudge back to the car.
  31. Collapse into the driver’s seat. I want to be done. I need to be done. But I’m not done. Rest in the driver’s seat for a few minutes.
  32. Drive home.
  33. Attempt to park at least twice before succeeding. The more tired I am, the more tries it takes to successfuly parallel park.
  34. Rest in the driver’s seat for a few minutes.
  35. Climb out of the car.
  36. Pick up each bag from the car. Swing one over each shoulder. I try to get no more than two bags per trip. Otherwise, I may need to make more than one trip up to my apartment, and that’s too exhausting and painful.
  37. Get to my apartment.
    • Walk down my walkway.
    • Climb up the stairs.
    • Unlock the door.
    • Press the button for the elevator.
    • Wait impatiently with the bags on my shoulders, because it’s easier than putting them down and then having to lift them off the floor.
    • Take the elevator up to my floor.
    • Walk down the long hallway.
    • Fumble with my keys. Hopefully don’t drop them (I hate when that happens while I’m carrying things!)
    • Unlock door. I’m home!
  38. Walk directly to kitchen.
  39. Unload first bag from shoulder to the kitchen counter. Ahhhh!
  40. Unload second bag (if there is one) from shoulder to the kitchen counter. Ahhhh! Relief!
  41. Walk back to front entry.
  42. Close door.
  43. Remove coat, scarf, and other layers. Kick off shoes.
  44. Walk back to kitchen.
  45. Remove each item from the bags.
  46. Put all freezer items into the freezer. Hopefully apartment is warm enough that fingers don’t go warm right away.
  47. Put all fridge items in fridge. Hopefully there’s room on the upper shelves so I won’t have to do more bending at this point.
  48. If I have enough energy, put all canned items in the cabinet. Try to carry several at once to reduce trips across the kitchen (about 4 feet each way.)
  49. If I still have enough energy, put away the rest of the food.
  50. Walk to the front entry with the grocery bags. Leave the bags there so I remember to bring them to my car the next time I go out.
  51. Wash hands. I want to make sure I don’t get the flu on top of everything else.
  52. Drink lots of water. I’m probably dehydrated by now.
  53. In the summer, go to the bathroom. I’ve undoubtedly drunk 8-16 ounces of water, if not more, during this trip.
  54. Collapse on a chair or the couch.

And now the shopping is done! Yay!

I didn’t plan out this list in advance, I just wrote it as I thought of it. And then at the end I went back and added #24, because I realized I forgot to mention paying. I’ve probably forgotten other things too. But I find it interesting that I didn’t plan this list, and yet more than half of it involves what happens after I leave the store. That says something.

How does your list compare? Is it similar? Completely different? I’d love to hear about it! I think this is an activity that many people take for granted. I used to, but I sure don’t any more. I’m incredibly grateful that I can still manage this most days!

12 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

More disability insurance bullshit

February 28, 2013

The other day I wrote about the inanity of the disability insurance system. Today I finally got in touch with my doctor and she read off the questions they sent her.

First, I love my doctor. When they called her, she refused to answer their questions on the phone and insisted that the questions be sent in written form. Lovely. And she’s going to send me a copy in advance so my lawyer and review it before she sends it in. Let’s just hope it helps me.

So anyway, she read the questions. And I didn’t like them. There were some along the lines of, if Prednisone and Plaquenil were helping me, why did I go off of them. Um, HELLO?!?!?!? These are not drugs to stay on long-term if you can help it! Why on earth would they suggest otherwise? And of course they asked why I didn’t try other disease-modifying drugs. I wonder if they mean the drug that’s in a class I’m allergic to, the one that causes permanent infertility, or the chemo drug? Because those are the only options I haven’t tried. Anyway, these questions are all focusing on treating the pain, and if you’ve been reading this blog for any length of time, you know that pain is not what’s keeping me from working these days. It’s the fatigue that’s stopping me from working, dating, spending more time with friends and family, getting out of the house many days… you know, having a LIFE!

Of course, the problem is that these insurance folks don’t see a person in those medical records. They see symptoms that could cause them to have to pay out lots of money, and they don’t want that. So they’re looking for a way to not pay the money. Even though if I had the money, I’d probably get better faster because I’d have more stable health insurance and more money to pay for treatments that aren’t covered by insurance, not to mention less stress and more stability in my life. But no, they’d rather try to avoid paying at all, which just delays my treatments, which means that if I do eventually win, I’ll be on the insurance for even longer. I’d rather get the money now so I can get better and then go back to work. And then they wouldn’t have to pay me at all.

Maybe I should buy a lottery ticket instead. Because, yeah, that always works.

I have to find a way to get healthy. I have to get healthy, start socializing again, go back to work, and then figure out how to fix this ridiculous, unfair, broken system that is completely stacked against the patient. I need to figure out how to lobby legislators or whatever to provide some fairness to this joke of a system.

It’s just not ok.

I used to end every post by asking readers to share it. I stopped doing that because I don’t think it helped and I’m less concerned by the quantity of readers than by the quality of readers (as in, getting people who are in some way helped or entertained by my writing.) But this time, I’m asking you to please share this and any of the other insurance-related posts. It’s so important to start opening people’s eyes to this. Everyone is so focused on health insurance. Yes, that’s important, but disability insurance is important too. And what’s the point of having it if they won’t provide the service that you’re paying for? People need to start realizing this, so that we’ll have more support as we work to improve the system. So please consider sharing this on Facebook, Twitter, Reddit, or whereever else you are. Or even by old-fashioned email (does that make me sound old?) For all but the last, just use the little buttons below this post. It’s a small way to help me work towards one day changing the system.

I can hardly wait to get started.

6 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Insensitive, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Ergonomics: Our bodies deserve nothing less

February 18, 2013

Pain is bad.

Everyone has experienced some level of pain. It could be a stubbed toe, a paper cut, or chronic pain that never goes away. It could be a broken leg, a bumped head, or childbirth. There are many causes of pain and many ways to experience it. We all tryErgonomic position to avoid it and lessen it. Why, then, don’t we help others avoid it too?

I got a call last night from a friend who has “tendinitis.” I put that in quotation marks because I was told that I had tendinitis for several years as a teenager, and of course what I had turned out to be something entirely different, so I’m skeptical of catch-all diagnoses now. Still, this is what he was told. He graduated from college last spring, and the pain started within a month of starting his first full-time office job. He had worked during the summers before, but never at jobs that required so much time at a computer. Now, he’s spending 10 hours a day at work (or sometimes more) and almost all of that time is spent looking at and typing on a computer. He called me because he knows about my history of pain in my wrists (among many other joints) and he figured I’d know all about ergonomic positioning. I told him all about that and more, of course (such as warning signs of other problems.)

What angers me is that no one had told him this before. I only know so much because I have made it a point to study it. I look things up online. I ask questions of my doctors, my physical therapists, etc. I have had two ergonomic assessments done. If you don’t know about ergonomic setups, here are some great tips that I found online. I read it through and it’s fairly accurate and and thorough. I would emphasize the need to take more breaks, though. But anyway, as I was saying, I found this information on my own. Why wasn’t it shoved in my face? Why didn’t someone offer it to me on a silver platter?

Some people are ignorant about these things. Others assume it’s obvious and everyone knows. Many people try to help but their knowledge is lacking or plain wrong, and they do more damage than good. Of course, there’s an easy way to fix this: every employer should be required to provide ergonomic assessments, and then make the necessary changes for their employees, such as providing footrests and height-adjustable chairs. I had one employer who was willing to pay to have a professional come to our office to assess the workers. This was fantastic! Of course, it only happened because I found the professional and then was insistent with the boss. But it happened. Another employer was quite large and had their own assessor on staff. It was her job to work with any employee who made the request. I found out about this after I asked for certain accommodations, such as a different kind of mouse. Even though I’d had an assessment done before, they wanted one by their person before they would provide anything. And if I hadn’t asked for accommodations? Well then I’d never have known that this service was available. My coworkers had no idea.

This should be standard in all offices. Every one is at risk for repetitive motion injuries, postural problems, etc., from using a computer for many hours a day. The human body was not made for this. Why not reduce the risk? So much money is spent on bottled water (most tap water is just fine,) plastic forks (is it so hard to wash real ones?), holiday office parties (that most people really hate,) and other wasteful things. Wouldn’t it be better to spend that money on the health of employees? In fact, I bet health insurance companies would back this idea. Think of the many tendinitis, carpal tunnel, and other cases they could avoid through these preventative measures.

Some pain can’t be avoided. Tomorrow I could slip and fall on the ice. Today I got scratched by a cat (I definitely get along better with dogs.) Why not avoid the pain that can be avoided? We should all insist on better accommodations at work and be sure to make the necessary changes at home. Our bodies deserve nothing less.

2 Comments | Educating, Frustration, Job, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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