Friday, August 26, 2011
First of all, it's got a padlock on it, to which I do not have the key (my husband does).
Do you need a screw driver? Sorry, you're out of luck.
It's not filled with craftsman tools or an old hammer passed down from generation to generation.
There's no sweet family history in this box. The toolbox contains my weekly sweet treats.
I'm sure that you could mold some Laffy Taffy into a paint scraper, but it wouldn't work too well.
Red vines for hanging pictures - no good, but your walls would smell nice.
Peanut butter would probably make great putty in a pinch (see my recent blog on uses for PB).
Necco wafers could be used for making chalk outlines while measuring.
Perhaps some pop rocks would unclog your kitchen sink (be sure to take cover!)
Gummy fruit slices would work great to balance out a wobbly table.
As much as I try to tell myself that I can have weekly treats out in the (unlocked) open, those treats have turned into daily treats, and even 1 entire day's worth of treats too often in the past.
It was only after I found SparkPeople a few months ago that I was able to admit to myself:
I am an emotional eater.
I used to push my shopping cart through the grocery store, pretending that I was someone else. Casually reaching for the multipack of my trigger foods like Lemonheads and dark chocolate bars, telling myself that it was no big deal.
After all, the king sized packs were on sale, right? I am SURE I can just put all of it in the pantry, and not touch it until Saturday (6 days from then). Meanwhile, deep down you could almost hear the echoing sinister voice whispering 'uh huh, good luck with that'.
I have fought many an emotional eating battlefield in this candyland of life, and do not feel that I have overcome it. Actually, I am not sure if that will ever happen.
Maybe one day that toolbox will actually have some tools in it, and I will be able to have my trigger foods around. Only time will tell.
For now, when the microwave light bulb burns out and needs to be replaced, I'll be knocking on your door for some tools : )
Wednesday, August 24, 2011
Yesterday was a long day at the pain management building of the hospital.
Various parts of my body had been grinding away at me with pain, numbness and 'buzzing' for the last week. My entire left foot, one of the toes on my right foot, and my right hand pinky finger had been swollen and purple, and just misbehaving from my Complex Regional Pain Disorder (CRPD).
My husband made me call the hospital and tell them what was up, err, what was purple, and I was then ordered to come in ASAP to get my third spinal nerve block procedure in a 15 week span. I was supposed to space them out with 12 weeks in between, but my CRPD was not having it.
We were ushered into a green hued, dimly fluorescent lit room, and then one of my doctors came in to talk to us.
Have any of you seen Joe vs. the Volcano with Tom Hanks? His office lighting reminded me of this room in many ways ("suck suck sucking the life outta me!").
The docs were hesitant to do the same procedure again (since it's not really working). They wanted my consent to go another route for a procedure that would (hopefully) open the flood gates of my vascular system and get blood moving to my foot/toe/finger without waking the monster of Erythromelalgia (EM). It would be tricky, as they did not want to trigger more pain from my EM, which also affects the vascular and muscular system.
I agreed to the procedure and stressed to them, "please, DON'T wake the monster!"
My husband was sent to the waiting room and we were off to the procedure room. The anesthesiologist walked in next with extra folks in smurfy blue uniforms to help out. The doctor told me that he was having a tough time getting the needles into the area around my spine since apparently I had GREAT hamstring muscles - Hoorah for that - I think? I'll take whatever compliments I can get with my piddly no impact home workout dvd's right now. Ha!
Later hubbie drove me home to sleep, and thankfully, I woke up with some relief. The EM monster did not retaliate as much as we all had feared it might. Big smiles for that.
This means that they can slowly give me higher doses of the new drugs by way of this procedure every 4 weeks. It's not something I enjoy by any means, but I'm game. The drugs administered have a short lifespan in my body = good news.
But I am running out of options to treat my chronic pain, and have not been getting major relief yet from anything I've subjected myself to. My primary pain doctor cornered me yesterday and told me that she wanted me to get something called a Spinal Cord Stimulator attached to my spine, with the lead wires then plugged into a small device implanted in my bum cheek. I've had 2 other doctors in the past push this on me as well. I guess I can't call those guys quacks anymore : ).
But I am NOT OK with it, and it does not sit well in my heart of hearts, you know?
I still continue to choose daily pain over body numbing 'relief' that would prevent me from doing activities that I am fighting to get back in my life again, like running and jumping.
And if I said yes to the spinal cord device how would my life change?
What if I wanted to coat myself in various shades of plaid clothing and try golfing?
Nice try, but no.
How about my dreams of hang gliding lessons and (if I mustered up the nerve - Ha Ha 'nerve'), skydiving?
Just a dream hon'. Not really a reality for you if you get this device implanted.
Never mind that I find it extremely un-sexy to have essentially something the size of a car alarm remote implanted in my bum cheek.
Would I set off alarms at the airport?
Perhaps some high pitched sound emanating from my tooshy that only I would be able to hear?
Would my acupuncture treatments trigger car alarms to go off in the vicinity?
How would I change the batteries???
I asked the doctor, "have you had patients who pursued some of the activities that are considered a big no-no with this procedure/device? Perhaps people who were 'too active', and decided to do 100 jumping jacks?" I asked. "Yes, but you have to understand that there are going to be things that you simply CANNOT do." She said that she has had to re-open the area around the spine to re-attach the leads in patients in the past from too much activity.
At this point, in my mind I'm thinking, 'oh great, so you CAN plug me back into the Matrix when my wiring comes free...'
I'm a firm believer in going with your gut, and my gut has been screaming 'NOOOOOOOOOO' about this for years now. Perhaps this works for others, but I don't see this as an option for me yet, and I am not a procrastinator by any means.
I think for now I will continue to get up daily and move my body with some exercise 6 days a week. I will Spark daily and pull strength from my Sparkly pals. I will pay attention to what I fuel my body with each morning through evening, and try not to give into the despair and random hopelessness that pulled me to the pantry too often in the past.
I choose to live with my daily pain; which means feeling all of it, and respecting it.
Sunday, August 21, 2011
I started to research ideas on how to use up a jar of peanut butter after my husband got his quarterly peanut butter and jelly fix.
See, I didn't care if he would need to buy a new jar every time the next craving hit him. The $4.00 jar was nothing compared to the lack of sleep and stress it was causing me by having it around (that constant singing!)
That could mean 12 weeks of drawn out torture for me, a nut butter addict, who used the heavenly goo as a crutch for decades.
I went hunting online for ways to clean out that jar with something other than my mouth (see below):
* Make peanut butter cookies and bring them to work. Great idea, but one cannot hide the odor of a nutty cookie, and I would then be revealing that hubbie's peanut butter was now gone once he got home.
* Go to an elementary school and volunteer to get the bubble gum out of children's hair- Ha!
* Make dog cookies and gift them to the canines in the neighborhood (this one I have done).
* Price tag removal on books. Apparently you can rub it on price tags AND ruin your book covers at the same time!
* De-fish the house. After cooking your fish, remove it from the pan, add some PB and heat it up. Umm, wouldn't this make your house smell like fish AND peanut butter?
* Lubricate your lawn mower - I'm thinking that this one should come with a warning to wear gloves.
*Mousetrap bait - Has anyone seen the movie Wanted? I believe this one for sure. But sadly (or not sadly), I have no mice to trap.
* Shave Lotion - Unless you want to see me leech onto my own legs with fury, I don't see this one happening. Plus, think of the injuries to come in the tub from slipping!
* Leather furniture cleaner - Really? Not a good idea for either myself or my furniture. I can already hear my husband asking me why I was licking the sofa (again).
I'll be tossing the list of peanut butter uses for now.
I'm pretty sure I'll be saving us a trip or two to the Emergency Room as well from slipping in the shower - Ha!
Monday, August 15, 2011
My husband's sister called last week and said that they would be driving through our area after visiting family out of state. They wanted to come over and visit. My husband has 2 sisters. Each with 3 children. This particular one has 3 sons ranging in ages from 3 - 13. I wanted to see them all. I missed them.
I made myself go to Target to get back to school supplies for the 3 kids coming over, as well as for his other sister's 3 children. I was not at the store for long. I had a detailed list to save time. Even still, my pain started to cover me like an iron blanket. I drove home and had to lie down. I was swollen and red all over, and had ice packs on my hands and legs to help cool the fire of my nerve and vascular pain.
My husband came home later and said that he was impressed by the items I got for each child. He then looked at my hands and feet and face (as my disease has spread recently), and scolded me for making the trip without him.
"I HAD to do it, don't you see? I wanted this to be from me, not stuff that you bought and put my name on. I just had to do something for them myself", I whined.
I was angry at my disease. Angry for my world shrinking smaller before my eyes. Angry at my pain.
I wanted to do just one little thing for them so badly. Why was that becoming increasingly impossible? He gave me a sad smile, and asked if I needed more ice packs.
I had not seen my husband's family since last November, and I was not feeling like myself even then since I was in a lot of pain. My progressively poor health has prevented me from traveling, really anywhere. The only reason I flew down last November was for a funeral. I sucked it up. I made it work.
You know those fun games we all have played at some point in life, that although small, build family bonds?
Playing Uno, drawing on the sidewalk, teaching a child to snap their fingers, or build a fort out of cardboard boxes?
The texture of that cardboard, the pressure inside my hands and feet, even the sunshine on my face and wind at my back - all bring me pain too often. So when my 7 year old twin nieces walked over in their pretty dresses at that funeral service, leaned on me, and went to hold my hand, their mom said, "Auntie's sick. Why don't you go hold Uncle's hand?"
Will I always be the sick Auntie? Each time I've seen these kids these past 5+ years, the hesitation in their reach to hug me (at their mom's request to "be gentle"), and bit of fear in their eyes breaks my heart.
There are literally dozens of kids in my husband's family. Almost every one knows I am ill. For the older kids who remember me as the goofy and silly aunt who used to play hide and seek under the dining room table with them years ago, I get their sad smiles as they hover around me, but are not sure what to say. I am sort of broken to them; like a toy who's batteries have run out. I just need new batteries, don't you see?
My sister in law and her family came over as planned. I had to disappear for a nap to sleep away some pain, and then huddled in the corner chair through most of their visit. Any time the 3 year old tumbled in my direction, someone would quickly swoop him up and away from me.
I did the best I could, but felt that it was not nearly enough (we are our worst critics of course). This was not how I wanted to them to see me.
But I am sure I could have said no and not opened my home to them. Selfishly I wanted to say no, but I can't crawl into that depression hole anymore.
Does this mean that I should stop referring to myself as a regular gal who has a mean disease, and instead, think of myself as an ill woman who has some good days every year?
I'm afraid that those little hands which currently want to hold mine will be too old to want to reach for my red swollen limbs as time moves on (and I get even worse). They are growing up fast, and slipping away.
I need new batteries. NOW...
Wednesday, August 10, 2011
If a friend asked you to post a photo of yourself, would you be able to pick one immediately? Let me be more direct: If your weight has gone up and down like a roller coaster, which 'you' would you want to have them view???
The 'you' that you wish to get back to? Perhaps a photo of someone else's body that you were striving to be like? How about the bravest of the pack, who post photo's of their true 'you', as in today's version?
Another Spark friend had encouraged me to post a photo on my Spark Page months ago (CANNIE50). I recall being initially terrified since I had been hiding from the camera for a couple of years now - save for one silly photo with the Southwest Airlines Santa last December. My husband and I REALLY needed to shake off some sad feelings after a double funeral that we flew down for that morning. But Southwest's St. Nick was not going to tell anyone, and neither was I.
The idea of not only posing for, but posting a photograph of the 'current me' in transformation mode wafted through every grey wrinkle in my brain like the scent of burning popcorn in the microwave - it just wasn't going to fade away any time soon. As you know, I was still hiding from my mirror until recently, so you can imagine the anxiety I felt about seeing even myself in a pic.
I wasn't prepared emotionally to take a new photo of myself, so I started to look for photos I already had; or photos I had not yet thrown away that is. There have been so many variations of 'me' these past 5 or 6 years, and I was having a hard time picking one.
Have you ever tried to describe a new hairstyle to your hairstylist or a friend? Randomly whipping through magazine pages and often repeating phrases like, "it's like this, but more red like this other picture", or "I like the cut on this one, but the bangs are too short, and I wanted it more bouncy", etc. Well, I was lost at which Bren to pick. It was time to dive in and see what I came up with. I started to look through a small stack of photos.
There were snapshots from 8 years ago, before my disease, when my hands and legs were normal flesh tone and not swollen; before I let it take over my life for a while.
*OK, let's skip anything with full body shots to avoid that dilemma.
The next few pictures were of me when I was far too thin, about 7 years ago. A group of food intolerances decided to jump into the mix for fun, and I looked very pale and unhealthy.
Then I came across a photo from 3 years ago with my husband and another couple, who were both Emergency Room doctors, so they knew a lot about my rare disease. They very discreetly posed in a way to cover my swelling and redness (sweet people!), but there was so much pain in my eyes behind my forced smile, that I couldn't bear to look at it.
I think that was about the time in my life when I gave up the fight and let my disease and the basket-full of autoimmune illnesses drown me for a long while. I was so tired of being attacked from all sides, and I felt very alone.
*Down to the last picture.
No surprise, it's with Southwest Santa. I was almost 30 lbs heavier from swelling and depression weight, and really was not occupying a great place emotionally. I needed something tangible to grab onto and get out of the muck.
I shared with a couple of super duper Spark friends that I had made a promise to myself to pose and post a picture on my Spark Page on my birthday a few weeks ago.
I did my hair, I applied my make up with a butter knife (ha!). I primped and posed. I really tried to be in the moment and let my new appreciation for myself shine through to the camera.
Honestly, I pulled strength from many of you Sparkers, who proudly post their photos, to gather the courage and do so myself, and for that I thank you all. I feel a bit embarrassed now that I hid for so long.
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