A cathartic cry and Mom

March 20, 2013

It’s not like I haven’t thought about writing in the last two weeks. I’ve actually wanted to write here more than that one post. But I just couldn’t.

Last month I wrote about the latest disability insurance bullshit. After that delay, I got a bit depressed. I wasn’t thrilled about the depression, but I also wasn’t worried. I’ve experienced it before. It wasn’t too bad, and I knew it would go away once the insurance stuff got settled.

Cathartic Cry

Then last week I found out about a new delay. Now it looks like I should have an answer in April. Maybe. I had just gotten the notice from my landlord saying that I had to either renew my lease or give them notice. I had just gone to the bank to change my accounts, because I can no longer meet the minimum. All sorts of other things depend on this insurance decision. And it was delayed. Again. Still. More.

I was really depressed after that. I cancelled plans that I had been looking forward to for a long time, and I sat home alone in my apartment. I had no desire to go outside. I didn’t want to do anything. I dreaded seeing my friend the next day. She didn’t know the whole story. I didn’t want to explain it. I couldn’t explain it. But I also couldn’t have a happy, cheerful, pleasant visit.

Then I thought more about the way the insurance assholes are treating me like shit. They’re acting like I’m not a real person. They’re taking away from my focus on my health (ironically!) My health has suffered because of the stress of this. I was just starting to make real progress, and this bullshit has led to a backslide.

And I suddenly knew I needed to cry. I had to get it all out. I called the one person I really wanted to talk to: Mom.

I got her on her cell phone. She was on her way to a nice dinner party, so I tried to tell her we could talk later, but she heard it in my voice. She insisted we talk. What a mom! I sobbed on the phone to her for a long time. Yes, these were full-out sobs. I told her my frustrations, my anger, my fears. She listened and somehow she said all the right things. She supported me.

After that call I felt much better. It was the first time I’d cried about this insurance crap, and I really needed it. I was exhausted, but I felt lighter. I spent the night relaxing, and I chose a light-hearted, fun movie to watch before crashing early. The cry had really worn me out. The next day, I cancelled the long-awaited plans with my friend, and instead spent the day with my mom. The sun was out for a change, and we took a long (well, long for me) walk in a park I’d never been to. Fresh air, sunshine, trees, a pond, and dogs really cheered me up. Best of all, my mom is my best friend, and it was great to talk to her. Back at her place, we talked a lot. I helped her clean out her desk, which made her thrilled and made me feel useful and productive for a change. We had dinner with my dad, and then the three of us sat around talking about all sorts of things that had nothing to do with my health or with insurance. Like “normal” people. It was relaxing and lovely. I left their house feeling like I could handle things again.

I won’t say that my depression is gone, but it’s a hell of a lot better than it was a few days ago. Sometimes all it takes is a good, cathartic cry. And mom.


Following the gray

March 7, 2013

I thought my last post was a day or two ago. I was shocked just now to see that it was THREE days ago!

This is a bad, bad, bad day for me. Boston has been getting a lot of rain and snow, which I don’t mind too much (as long as thePhoto 3 snow isn’t enough to require shoveling.) What I do mind is the lack of sun. Even on the days without precipitation, there’s no sun! A few times I’ve woken up to see some blue sky out my window, but I can only see a sliver from my bed, by the time I get up an hour later, it’s gone. A day or two ago (I really can’t tell the days anymore) I saw some blue sky. It was so exciting! I had thought about taking a walk, and that gave me the push I needed. I walked a few blocks and back, then found a place to sit. It was too cold to sit still, but I did it anyway for as long as I could because there was blue sky! It really helped. Unfortunately, the sun was behind the clouds and sunset came less than an hour later. And that was the last time I saw blue sky.

When I was a kid, I knew I didn’t like the early sunsets in the winter. I knew it, but I didn’t know why. It wasn’t until much later Photo 1that I realized it was a seasonal thing. And the first time I heard of seasonal affective disorder (SAD), it just clicked. I suddenly knew why I became grumpy every October, and bitchy by November. And those manic days at the start of spring made sense too.

I’ve been feeling it getting worse every day. Last week I felt so lousy from a resurgence of symptoms that I didn’t leave the house for three days. Those were the sunny days, of course. Since then, I’ve been dealing with SAD, the worse symptoms, and the latest round of insurance bullshit. Add to that concern over 5 ill family members (yeah, it’s been an odd week), uncertainty over my immediate future (thanks to the insurance crap,) and the loneliness of sitting home by myself while my friends are all at work, and you can begin to understand why this hasn’t been the greatest week for me.

The gray weather can’t last forever. That’s what I keep telling myself. This is a long stretch, even for Boston. The sun should be out on Saturday. I have no plans for that day, but I sure hope to be outside. A lot. In the sun. Enjoying every minute of it as much as I can. The rest of the shit will still be in my life, but I have a feeling it won’t be nearly as bad when the sun comes out. I just hope it comes out soon.


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!


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.