This post is from my other blog. I’ve decided to post it here too, because it has a lot to do with fibromyalgia. From time to time, I’ll be writing follow-ups to this story on this blog and I wanted you to know the back story, so that it would make sense. So here it is:

Angels Angels Everywhere

April 8, 2008

For some reason, I’m having a hard time putting this post into words, but I’ll try. It’s probably going to sound all new-agey or hocus pocusy, m’kay? I have to say it though, so here goes.

Of all the great mysteries in my life, the one that has always puzzled me most is how fortunate I am. Things can get stinky bad, but really, the number of incredibly good people I’ve known and the kindnesses that I’ve witnessed have often left me feeling amazed and hopeful. Of course, when I’m on the receiving end of the goodness, I feel amazed too, but it’s mixed with a sense of being undeserving. Maybe that’s the Catholic maternal/ Jewish paternal genetic double-whammy, or some Wayne’s World “I’m not worthy” thing, but it’s true. When it gets right down to it, no one owes me anything, and the good stuff is just icing on the cake. I’ve gotten so much icing, and I can’t for the life of me understand why. This isn’t some sort of false modesty, it’s just fact. Over and over again, just when I feel that I’ve reached my lowest ebb, something wonderful happens.

My supervisor e-mailed me last week to see if we could get together, “to discuss business and because I miss you!” I missed her too– we hadn’t spoken for months. She is one of the feistiest, smartest people on the planet, and I learned so much from her. Unfortunately, my physical health dwindled considerably while I was working for her, and I felt less competent and productive than I ever had. I took a leave of absence last summer, thinking that I’d rest and regain my strength, but I never did. What started as a short term leave, ended up being forever. I felt exhausted, depressed and embarrassed, and when my long term disability claim was rejected by the insurance company, I didn’t appeal their decision. I had grown tired of jumping through hoops trying to prove my case, and of struggling to retain my job, because the more I fought, the worse my condition became. I’m embarrassed to admit that I gave up. Not just the job. I gave up my self-esteem, my identity as a competent worker, and my refusal to succumb to Fibromyalgia. While I was with this corporation, the department I was in was outsourced. Most of us became contract workers, and there was a severance package involved at the end of the assignment. So, I gave the severance up too.

I e-mailed my supervisor back and told her that I had a doctor’s appointment in Columbus on Wednesday. We agreed to meet for lunch afterward.

“So what are you two going to talk about?” Tom asked.

“Well, I imagine that she has to ‘officially’ fire me at some point,” I told him. “So, we’ll get that over with, and then we’ll just catch each other up on life.” I was mentally preparing for it. Although I knew I was already canned, I promised myself that I wouldn’t cry when I heard the word “termination.”

We met. We hugged. We ate. We talked. She did not terminate me, although she very nicely offered it as an option. She also said that I could resign. But what she wanted me to do was to try coming back to work, not even for the entire length of the contract, which is probably sometime in July, but just until the end of May, so that I can collect my severance.

Okay, I’m crying. Hang on a second.

Okay, I’m back.

I told her that my body may not allow me to work as long or as steadily as I could before, but that I really wanted to try. We discussed the fact that I no longer live in Columbus, and she said that she’d check to see if she could find a place for me to live during the week. I said that I’d check around too.

The following morning, she e-mailed me back. A supervisor and a co-worker had each offered me places to stay, and another one offered today (I’ll still come home on the weekends).

I know I’m not explaining all of this well, but things have been so crazy this past week, and I’m kind of rushing through, trying to explain.

Here is the short version:

Just when things seemed that they couldn’t get much worse, I’ve been offered an opportunity to work for a few weeks at the job I held before my Fibromyalgia got so bad. We need the income, and if I can make it through to the end, I’ll have a small amount of money which we can use to move. If possible, I’m also planning to earmark a small portion of it for a teacup pup!!!!!!! It’s not a lot of money, but right now it seems like a fortune.

Time after time, this woman has gone to bat for me. She’s not only my supervisor, but my friend, and she never gives up on me. Her actions, and the fact that others have offered to open their homes to me overwhelms me. My coworkers are incredibly sweet. No one gains anything by doing all of this (in fact, they’re giving up some things). It’s just kindness, pure and simple, and it makes me feel very humbled and emotional.

See what I mean? I’m not kidding about all of the “Touched by an Angel” stuff that happens to me. I’ve been so lucky to have known so many angels.

Obviously, my life’s going to change drastically for about a month and a half. I’m not sure how often I’ll be able to write, but I’ll post when I can. I’ve been reading your blogs, but my brain’s been a little too scattered to comment right now. I promise, I’ll play catch up soon. The people at work aren’t the only angels I know.

I’ve got to go start packing.

Note: The guy in the photo has nothing to do with any of this. I just love the picture.

The Car Trip: A New Challenge

September 19, 2007

Okay, I know you’re not supposed to drink and drive, but lately, I can’t even ride in a car without a little whine. Tom and I drove to the lake a couple of weekends ago. It’s about an hour and a half from here, and as our journey progressed, I could feel burning pain settling into my hips, back and legs. It increased with each mile, and I spent the last half of the drive in tears, arranging my pillow and trying to find a comfortable position. The position I found was on my hand and knees on the passenger seat, facing backwards (“Don’t you DARE laugh at me,” I told Tom). Hey, whatever works. So there I was on all fours, my face near the window, hair blowing crazily in the wind. If I’d had a collar on, someone would surely have mistaken me for a sheepdog.

When we got to the lake, I walked around for a while, and started to feel better. Soon the pain level was back to “simmer.” But these experiences make me almost phobic about repeat performances. Today, I’m driving to Columbus to see my mother, and I’m really afraid of the consequences. I try to think positively about all of this, but there’s never any way of knowing if I’m going to be out of commission for a few days afterward or if I’ll be just fine. I think it’s the not knowing that bothers me most. But hey, that’s Fibro. We’ll see how it goes.

Fibrofog Blog

September 11, 2007

fogI am learning to deal a little better with the fibro fog (I hate that term- why can’t it be something pretty, like “fibro mist” or “fibro fantasyland”?). When I realize it’s coming on, instead of crying in frustration as I used to, the first thing I do is to warn Tom. This way he’s aware that I’m in space cadet mode, and he stays on the lookout for my keys, my cell phone, and the glasses on top of my head. Also, he can flee, screaming, if he needs to.

If I can rest, I do it. Sometimes, just going back to sleep for a few minutes, and waking up as though the first time didn’t count, helps.

I drink coffee. Lots of it. I don’t know if this is a remedy, I just love coffee.

Stretching helps. Even two minute’s worth.

I write every day. Even bad writing (like this) helps me keep my mind focused on something, and enables me to stay as sharp as a butter knife.

I ask myself a lot of questions throughout the day: Did you take the key out of the ignition before locking the doors? Check. Did you turn off the stove? Check. Are you thoroughly sick of feeling so stupid? Check.

Mostly, when I get this way, I try to give myself a break. I don’t talk on the phone, I try not to schedule big events, sometimes I just zone out and watch a movie or something. I try to be as gentle and nurturing as possible, and not beat myself up with negatives. If I had a friend who was a little slow on the uptake, I’d never scream or grow impatient. So I’m working on treating myself as my own best friend. My own very slow, spaced out friend.

Stairs and Bears

September 10, 2007

ford fallI am clumsy and uncoordinated. This has always been the case, although I’d love to blame it on the Fibro. My dad used to call me “Blunder.”

Last night, I fell down the stairs, five of them, and crashed into a piece of exercise equipment. Today, I’m bruised, I hurt all over, and my brain is foggy. Tom says it’s like living with Gerald Ford.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This is going to sound crazy, and very middle-aged. Let me start out by saying that, in my entire childhood, I never had a stuffed animal. Not one. Maybe a couple of dolls, but that’s it. And I could never understand why my friends had these menageries of them; some even took them to college and had them laid out on their dorm beds. I am not like that. Give me a pillow and some sheets with a decent thread count, and I’m good to go.

Having given you my disclaimer, I have recently changed my stance on this. I was in the hospital about a year ago, and my mom gave me this soft, scroungy looking little stuffed cat. As I was recuperating, I hugged that thing for dear life. When I was well again, I put him on the shelf.

Lately, when I’ve been in pain, and feeling very wah wah, I’ve taken to keeping the littlebear guy handy. What I really want when I get this way is Tom– I want a human teddy bear to hug and comfort me. One day, I had to go crash because I was feeling horrible. I didn’t say anything to Tom, I just went to lie down for a bit and wait for the feelings to pass. I never want to be helpless or demanding, so I don’t say anything. Well, Tom came into the room and saw me lying there, sniffling, he came in and put his arms around me. Like magic, I felt better and stronger.

It’s sort of impossible to have Tom around for this sort of on-demand comfort, so I’ve taken to hugging that little kitty. It truly does help, but he’s awfully small, so I’m on the lookout for a big, soft teddy bear– a surrogate Tom. Try it, you’ll like it.

Read the rest of this entry »

Blob, Blah, Blog

September 2, 2007

blobTom and I were talking about Fibromyalgia today (bleh). I told him that somehow I have to learn to make peace with it (which I think I’m slowly doing). He pointed out that the more you fight it, the bigger it grows. I thought that was a wise observation.

It made me think of B movies about things like radioactive man-eating blobs (um, like the one called “The Blob”). You release it from its jar, and it just starts growing like crazy. You shoot it, and it grows bigger. You fire missile launchers at it, and that just irritates it and makes it angry. “The more you fight it, the bigger it grows.” And so, I will learn to befriend the monster (Fibro), and maybe it will be nicer to me. If only someone had played Parcheesi with that radioactive man-eating blob, it may have stopped tormenting everyone.

Wahhhh…

August 27, 2007

man rayA while back, I started two separate blogs- one for my regular life, and reserved for talking about Fibromyalgia. Lately, it seems that the Fibro blog is the one that I’m writing the most in, but I really do need a place to just whine and cry.

Don’t have a lot of energy (or brain function) to say a lot. I’m a little afraid, because I have always been able to push myself to get in a couple of bike rides during the week. This summer, I’ve been down to one ride a week. Yesterday, I hurt and ached and was exhausted, but I did ride twenty miles. Today, I’m completely drained, hurting, and foggy. Am I getting to the point where I can’t ride at all any more? Lidoderm patches are helping somewhat, but I’m so frustrated- I have so much to do, but I’m not even answering the phone, because the thought of mustering enough energy to talk seems impossible. The pattern now seems to be that if I do anything physical, I pay for days afterward.

I’m going to go lie down now. I’m really sad and frustrated with all of this.

Arghh. Woke up this morning feeling so happy. Tom and I started the day slowly, drinking coffee and talking in bed. It felt so nice. Soon, the all-too familiar pain started sinking into my lower back, hips, legs and booty, and in the middle of our conversation, tears just started pouring from my eyes. The pain was independent of what was going on– I wasn’t focusing on it, it has an agenda all its own. It’s embarrassing to be smiling and chatting, then crying simultaneously. Tom massaged me for a few minutes, and I began to feel a bit better. I made myself hop out of bed and begin the day. It seems to work best best to pretend that nothing unusual is going on, but in the background is the dull noise of pain and depression.

A Momentous Occassion

August 24, 2007

paintToday is the day that I finished painting the bathroom. It’s now marked on my calendar, and I will celebrate this date on a yearly basis. Hopefully, I’ll get lots of presents. I’m going to Hallmark to see if they have some announcement cards that I can send out.

This may not sound like such a feat for a bathroom the size of a Saltine box, but for me, it’s the equivalent of performing open heart surgery using only a nail file and some Elmer’s glue. My body isn’t cooperative these days, so I had to work slowly and kind of schedule painting around my energy and pain levels. Also, I’m really bad at the whole wall painting thing, so it took almost ten days to complete this task. Seriously, the room is only about 4.5′ x 5.5′, but for me, it may as well have been the Taj Mahal.

At first, I decided to cheer it up by painting it a sunny yellow color. I didn’t realize how different it would look when I got the paint home, but when I finished, it looked like someone had urinated on all the walls. Ugly and depressing. Tom got the idea of trying topaint roller sponge paint over it, so I tried that. The result was that it looked as though someone, after peeing on the walls, decided to throw blobs of Crisco at them. That Crisco that’s semi-mixed with chunks of fake butter. They haven’t invented the term for this effect, but “vomit-inducing” is close enough.

I went to a different paint store. This one had a little light box where you could hold the sample up to different types of lighting to see how it would actually look. I settled on this blue color. Not something I would normally choose, but it looked really good under the light.

I went home and restarted the project. Here’s how I did it.

  1. Spackled holes in walls.
  2. Taped towel holder, toiler paper holder, cup holder, and toothbrush holder.
  3. Painted walls urine yellow- two coats.
  4. Sponge painted walls with lighter yellow and white.
  5. Painted ceiling white. Two coats.
  6. Painted walls blue, three times to cover the yellow.
  7. Painted trim. Twice.
  8. Repainted places on walls where trim paint got on them.
  9. Repainted trim and ceiling where I splashed blue paint.
  10. Cleaned sink and floor where after poured white paint into a pan that had a hole in it.
  11. Repainted parts of wall where I once again got trim paint on them.
  12. Taped walls next to trim and painted trim again.space saver
  13. Painted door a couple of times.
  14. Sanded medicine cabinet and repainted.Removed tape.
  15. Took a putty knife and removed paint dots from floor, sink, windows.
  16. Scrubbed bathroom.
  17. SINGLE HANDEDLY put together a space saver for over the potty.
  18. Hung one of my paintings over space saver.

Ta-da!!!! It’s done!

To do this project yourself, here’s all you need:

One gallon pee-yellow paint

One gallon white ceiling paint

One quart white trim painthat

One gallon ice blue paint

Spackling paste

Paint rollers: 1 large, 1 for trim

Sea sponge

Corner sea sponge roller

Brushes: Large, small, angled, tiny

Painters tape

Naps

Lidoderm Patches, for muscle acheslidoderm

Newspapers for floor

Paint pan: check for holes

Stirring sticks

Screwdriver to remove faceplates. Note: if you paint the wall sockets (as I did) make sure you don’t gook up those little reset buttons (as I did)

Sandpaper

Lots of paper towelspills

Various cleaning products

Expendable pants and shirts (several of each)

Baseball cap– (I learned this a little late)

Tranquilizers, alcohol, Tylenol (I didn’t use these, but in hindsight, it may have helped)

Seventeen spare hours– to put together the space saver cabinet.

Total project time: 406 hours

Follow instructions above, and most importantly– have fun!

lichtensteinYes, I’m being sarcastic. I hate this &*%@!# syndrome, disease, illness…whatever it is.

Today, I found out that my short term disability claim had been denied due to “lack of medical evidence.” What bullshit. My medical history looks like the Encyclopedia Britannica. I can appeal it, but I am so mentally and physically exhausted that I want to give up. And I’ll bet that’s just what they’re hoping I’ll do, so I’ll have to fight it.

I also called the FMLA people. FMLA only lasts for 12 weeks, max. That means that on September 22, I’ll either have to go back to work, or be fired. This makes sense to me, actually– after all, they do have a business to run.

As winter approaches, I find myself filled with dread (of the pain) and fear (of the future). In the past, my fibro really only kicked in to an unbearable level in the winter. This year, it’s much more random. I’ve been hurting off and on all year, and have reached a new level of exhaustion. This causes the depression to become worse, my stress level to go up, etc. You know the drill.

What do I do? How do I support myself? I can’t afford to keep insurance. I can’t afford to keep going to doctors looking for a miracle. I’d really like to go back in time and be the peppy, workaholic gal that I used to be. Since that’s not possible, I think I’ll go and take a nap. I’m so tired.

Fibromyalgia Cease-Fire

August 19, 2007

Today, I’m having a Fibromyalgia cease-fire. That’s the point I reach after a brief cycle of sadness, frustration and fighting the flare-up that I can feel burning inside of my body. I ache, I cry– internally, I’m screaming, “NO, NO, NO! Go away!” Exhaustion, pain and depression win out, but I’m fighting a little less now, and sort of learning to bend with it.

It’s like when my kids were babies– you know that a baby is going to do what a baby is going to do, despite your best laid plans. You carefully arrange the day– make the bottles, pack the diaper bag, dress Junior in his cute little outfit and set out for some activity. As soon as you reach your destination, he poops all over the place, and you have to leave. Plans are scratched, and you have to just go with the flow. With a baby, you understand. You treat him with love, no matter how much he may have screwed up your plans. With Fibromyalgia, my tendency is to want to spank the baby, yell at the baby, punish the baby, etc. I have no compassion for this syndrome.

That was how yesterday was. I was supposed to go bicycling, and I wanted to paint the bathroom. Instead, my body began screaming for attention with all of its aching, my mood started spiraling downward, and I was overcome with fatigue. At first I resisted it. Then I grudgingly succumbed to it. I napped, wrote in my blog, and cried to myself a little. I asked Tom for a hug. Later, we watched Gods and Monsters and went to bed. I felt awful for changing the day’s plans.

I really get trapped into this feeling of wanting to climb out of my body, wanting to die, wanting some sort of magic feeling to wash over me to make this all go away. It’s like slipping on a banana peel…I’m flailing about, trying to regain balance, dreading the impending fall. It’s always two steps forward, ten steps back.

So, today I’ve called a truce. I will be kinder to the enemy (Fibro). I’m going to learn how to actually befriend this unwelcome visitor. I’ve watered the garden (it relaxes me), made breakfast (a small, no-cooking one), postponed my big projects, and for the past couple of hours, I’ve been listening to music and painting–a picture, not the bathroom. Now, I’m tired, and I’ll rest. Tom wants to go cycling later, and I’ll try again.

(Reading over this, I realize that it all makes me feel so *gasp* middle aged.)