lucky (for Jolene, the Bloggers and Invisible Pain Carnival)

I think I am lucky. I do. Now everyone will be mad at me and I will be thrown out of this precious group of supporters. I’m sorry and I know this is not what you are looking for in this blog carnival but I have to be true to my self. I am lucky. First of all, I don’t think my symptoms are all that bad compared to many of the other bloggers; I feel like I don’t deserve this group. Yes, I have pain but it doesn’t sound half as bad as my fellow members. I feel like a fraud, and a lurker and ashamed.  Second, a close friend of mine is dying of cancer, around the corner from me and she has weeks, maybe months to live. She is a wonderful person, someone with a sunny disposition, a great mother, good friend, an absolutely lovely family. Her name is Dawn and she is at least ten years younger than I am so she is in her early forties. When she was able to walk she would ask me how I WAS doing. How I WAS feeling and when you asked her, she always said “fine.”

She is not fine anymore. She had breast cancer and then brain cancer and now I don’t even know where the cancer is because it might be all over her. There are no more treatments for her, no more cures, no more hope. I am alive and she is dying. She has three children, 19, 16 and 13, all three amazing kids. They don’t deserve this in life and neither does she.

I drop by with food, I make a special chilled peach soup for Dawn because that is the only thing she can eat, a tablespoon or two of soup, if her family is lucky. I haven’t seen her in weeks but I know she got bad news on Sunday from Memorial Sloan Kettering Cancer Hospital in NY and no-one has seen her since. I don’t know how long she has to live but I feel it isn’t going to be very long. Her parents were in from Wisconsin for a long time and when her mom saw me and our mutual friend, her mom started crying and she and her husband, Dawn’s parents, continued to walk, slowly around the block holding on to one another.

I have Fibromyalgia and an Auto-immune disease called Hashimoto’s Thyroiditis. It was partially diagnosed 4 years ago. I felt like” I had the flu but without the fever.”  That is the only way I could describe what I was feeling and how badly it hurt.  I couldn’t get out of bed, I couldn’t do anything but sleep and moan, my whole body aching all the time. I felt like it had been flattened by an enormous truck,and the truck kept going but I did not.

I felt sorry for myself and my mother, and sister and husband and kids and friends felt sorry for me. I get tired easily, I live in the “fibro fog” people talk about, I can’t keep up with everyone else; I don’t try to either.  Still, with aching limbs, and joints and bones I am alive. Yes, I hurt but I don’t think I hurt as badly as some of you and I don’t hurt as much as Dawn’s children who are at home, by her side as she breathes, as long as she breathes. I may not have the perfect life, my husband hasn’t worked in a year and we have no income coming in. I have a Junior and Senior in High School but I can’t complain, I won’t complain because I don’t deserve to.

I am here today with clenched shoulders and tired, swollen feet, aching, tender and swollen, red joints but I am here. Even though there are a lot of things I could complain about I can’t. I won’t, because I’m lucky.

Prednisone Bitch, Part 2 (ENERGY!!!)

Image by Ben+Sam via Flickr

I just made 5  huge portions of baked ziti and covered them all with shiny aluminum foil. I put two small portions in the freezer, for my daughter (she’s a vegetarian) I made a big one for all of us to eat tomorrow night and made 2 to give to a friend.  I also made chilled peach soup with spices  for my friend and bought her a still-warm Italian bread from the bakery as well as a bag of brownies. I delivered the food, found room in our crowded refrigerator for ours and practically buried my head in the freezer to make room for the rest.  I have folded three loads of laundry, have one load in the washing machine that I will soon transfer to the dryer. I loaded the dishwasher and ran it, and then washed various pots and pans by hand, rapidly. This is so not me, this is me on steroids; I could be a walking, no sprinting, advertisement about drugs: this is my body on steroids, this is my body without; what a difference!  I am spritzing  Fantastik on paper towels to wipe up spills, I am cleaning up the house. My movements make me dart back and forth and I am talking at a really fast pace. I actually think my husband prefers me like this, the “energizer bunny” onspeed and not my usual low-key self. He better not get used to it because in a few days it’s all over and I will be back to my old chronic pain and fatigued self. Unfortunately.

I know it will be depressing when I come 0ff of this steroid high but it’s amazing how good I feel. Rush, rush, rush. My fingers can’t  type as fast as my thoughts are running, streaking through my head. My son, looks at me both amusement and  concern: “Mom, calm down” he advises, but I explain to him that I cannot. I will however, be back to my usual sub-par pace in a mere few days. As for now, I feel chipper; a little too chipper. Remind me later, friends, when this wears off, what it felt like to read this, to feel this, to embrace this because every day I will feel less and less energized, more and more lethargic. I am the movie “Cocoon” for those of us old enough to remember. I am “Cocoon” the re-make, 2010.

Luckily, the bitchiness of the first day is over and I am no longer throwing darts, figuratively, at someone’s head. I am not sending off vapid e-mails and insulting comments, that was bad-me, ” Prednisone Bitch-Me.”  Thankfully, she  has left, departed, disappeared, leaving behind sparks and energy.  It was as if wild-me had been let out of hiding after many years or I had broken out of prison. The energy is here, the meanness is gone, it was a good trade.

Perhaps I will go to bed late tonight ( can you see me tiring out quickly?) and do a few more chores, instead of what I usually do: read in bed, watch a little Food Network television ( or Bravo or Travel) and play on my computer. Luckily, I have already DVR’d a few shows, which I have never done before but accomplished that this morning after my first cup of really strong, aromatic, Bustello coffee. Now I know that I can watch these shows at my leisure, when leisure finds its way back to me, say in about 4 days or so. Right now, I can’t at all describe myself as leisurely.

The first night I was on Prednisone I was roaming the house, inside, up and down my 13  carpeted steps because I could not fall asleep, I was up until after 2am, now I know why. Last night, with my allergies so bad I had to take a Benadryl, I nodded off at about 12:30am. My usual bedtime sans Prednisone is about 10:30 and that’s on a really good night.

My mind races, my legs, that usually, carry the weight of the world, walking slowly  and painfully in sneakers has all but disappeared. I am practically frolicking. It’s like a vacation from chronic pain, fatigue, fog, and lethargy. I am very alert though when someone is speaking to me I don’t listen as carefully because my mind is already formulating the next sentence.

I’ve typed this whole page in less than a few minutes but don’t give me credit. In a few days I probably look back and say how artificial the feeling was, how the energy was just too much. Will I do that? Probably not. I will remember how I felt with great fondness and longing. This is not what normal people feel either, this is steroids, pure and simple, artificial and dangerous and today, it feels good. I’m not going to lie.