painmap.3.2

painmap.3.2

Originally uploaded by grinding

Painmap for Sunday, 3 February.

Pain levels for the day: moderate to high
Extras: don’t ask.

i hab a cold

Of course, I should have known it was coming. My littlest had one–3 days and he’s fine now. If this goes like usual for me, it will be a week or more. Suppressed immune systems suck.

I don’t even want to talk about pain today. My hands hurt. My shoulders hurt. Blah blah blah ad infinitum.  I’m kind of tired of hearing me in my own head.

painmap.2.29

painmap.2.29

Originally uploaded by grinding

Pain levels were better today, probably because I napped frequently and did little. What a trade-off.

Pain levels for the day: low-moderate
Extras for the day: I have a cold, which means my chest is congested and hurts, and my sinuses are clogged. It also explains those orange dots on my head. Also still having the extremely cold hands, and extra fatigue.

this was my month…

how was yours?

painmap.2.28

painmap.2.28

Originally uploaded by grinding

This was a bad day:

Pain levels: moderate spiking to high
Extras for the day: extremely cold hands and feet, disorientation, “clubby” extremities, irritability

it wasn’t supposed to be like this

Today was a pretty high pain day if I tried to do anything other than sit. Talking on the telephone was exhausting; so of course I did a lot of it. Typing kills, and yet I’m not quite done. If I hadn’t spent time on the telephone today then the mortgage people would be calling me again tomorrow and I wouldn’t be getting my Humira. I made arrangements to catch up with the mortgage and then called the pharmacy. I wasn’t upset when the pharmacy told me the prescription was going to be almost $1,500.00. I expected it. I calmly told her I wasn’t going to be able to fill my prescription for March and prepared to hang up. It turns out that the makers of Humira have an Insurance Assistance plan. That means they help you pay for it for about 6 months. I was much more emotional when I found out that I qualified.

You know, when you’re growing up relatively normal (I did say relatively), you don’t expect that by the time you hit your 40s (if you can even imagine yourself that old before you hit 20), you’ll feel like you’re breaking into little pieces if you have to spend an hour in the grocery store.

You’re supposed to grow up, marry the man or woman of your dreams, have a couple of kids, buy a house, a car or two, and have enough money left over for new shoes and the occasional date night. You’re supposed to get to work at a job you don’t hate, and come home to a family you love. There are supposed to be vacations, and no one mentions calculating the hours of travel time before giving up and settling for “local destination spots”; never seeing farflung family members unless they can scrape up the money to come see you instead.

Why doesn’t it work the way it’s supposed to? I know better than to count on my ability to produce a certain amount of income over any given period of time. I know it, and yet I do it anyway. I do it because it’s my job– not the work itself–providing for the family. I sort of wish I could comfortably slide into old expectations of a woman’s role. I think I would like it if I could get used to being home all day with nothing to do but laundry, vacuuming and dishes. Unfortunately, that would require more drugs than I want to take–or my “prescription plan” would pay for.

So we’re behind on the mortgage, again, but thankfully we have a plan to catch up. Our one, pretty old but still serviceable car is paid off, the cards we use to keep it running are not. We have utilities, groceries, medical expenses, taxes, school supplies, lunches, and fees. We’re very lucky to have a mortgage at all, to live in a bungalow that’s only a little too small to hold us, in a nice, safe, lower-middle-class neighborhood with a yard and a shade tree. I know we’re lucky. I just want to help pay for it.

That’s where the trouble arises. My husband doesn’t quite make enough to pay the mortgage all by himself, much less the other things, especially since the costs of his health insurance plan have risen at a much steeper rate than his rate of pay and I don’t get an insurance plan since I’m a “lady of leisure” out beating the bushes for work I can do at home.

I help, except that when I have a flare up that, like this one, pretty much kills a month or two of money-making work so that my output isn’t enough to make my share, I feel like an appendix. I might be useful for something, but no one’s quite sure what, and I could be cut out without any real loss to the body to which I belong. Of course, that’s not true. I’m quite convinced of my husband’s love for me, that my children love me, that even the pets kind of like me, especially when I feed them and that everyone would miss me if I weren’t here, even if that did mean more food on the table for everyone else.

I have, in my far past, been homeless, been on welfare, used foodstamps. I think this is one of the most terrible side effects of chronic pain, just as it is of chronic poverty. There are really very few people in the world who are content knowing they take more than they give.

And somehow? Knowing you’re loved and loving in return doesn’t quite give the same satisfaction as far as value to the community as being able to pay the mortgage on time.

painmap.2.26

painmap.2.26

Originally uploaded by grinding

It’s been a tough day.

Pain levels: Moderate spiking to high whenever I did anything physical at all, especially high in my wrists and lower spine.
Extras for the day: extreme fatigue, wanting to fall over while talking on the phone and losing track of conversations tired.

the white rabbit…

I’m late, again, but I’m not nearly so excitable about it as the White Rabbit was.

I’ve been having more and more difficulty concentrating lately. Part of it was the extreme levels of clutter in the house, part of it was the higher levels of fatigue. I haven’t done much today. The last few days even making dinner was a hardship. I’m easily distracted and confused and too many of my spices have fallen behind the stove, and far too much food has hit the floor.

I did get my office cleaned up enough yesterday so that I can see some surfaces and find all my tools. It required my husband’s help and still wrecked me pretty badly. Today I had followup with my doctor about my Humira, which is working exceptionally well, compared to the other meds I’ve been on. Then I came home and took a 2.5 hour nap, made dinner, and am ready to sleep again. My right hand and elbow are hurting enough that this isn’t much fun so I’m stopping here.

I promised you some cures. I’ll get to those soon…on a day I can be funnier about it.

painmap.2.25

painmap.2.25

Originally uploaded by grinding

I’m late. Despite the lack of pain showing on the map, it’s not been a very good couple of days.

Pain levels: moderate.

Extras, for the day(s): swelling, fatigue, poor concentration, poor coordination

it decided to move on…

Sorry about yesterday (if you were looking for me yesterday). I was so tired that when I thought of doing the painmap it seemed too overwhelming. No real pain issues, though. Moderate was the worst, shoulders mostly. I just haven’t had any energy. I completely forgot to mention my escapade with the wiring.

I decided, the day before yesterday, to rewire the office ceiling light. The old one, when I went to change the light bulb, fell out of the ceiling. In its defense, it had been there since the 40s. I guess it decided to move on.

I gathered tools. I got the new light fixture out. I wandered in and out of the office looking for more tools I’d forgotten. At one point I slammed my little toe against the dog’s kennel where I’d put him so he wouldn’t jump on me while I was on the chair doing the wiring. I went limping along, climbed up on the chair, rewired the fixture, found that the new one required too much electricity and was therefore useless because I’m brave, but not brave enough to rewire the whole circuit, climbed down, and discovered that there was actually a good reason for the pain in my foot. I’d cut into the toe to the bone and was bleeding all over. Good thing the kids had already ruined the carpet.

That little bit of foolishness registers as actual trauma on a fibro fan’s scale. Trauma means a setback- a “fibro flare.” Silly, isn’t it? Yet I’ve been extra tired ever since so we’re back to daily naps, which I’d thought were in my far distant (at least a couple of years) past.

More tomorrow. Maybe by then this extra fatigue will have decided to move on.