Wednesday, December 14, 2011
I woke up in such tremendous pain yesterday. I had to remind myself that the pain was from the Spinal cord Stimulator Surgery implant and open holes in my back. I tried to muscle through it, but kept crying, attacked with the question of, "what have I done?"
I began my Spinal cord Stimulator trial week as of this past Monday. The pain from my disease had pushed me to this last option sooner than I had anticipated, but a one week trial is supposed to help me decide if I want to permanently implant the device used to shock away up to 40% of my pain in my legs. It sounded so medieval and barbaric.
"What is more important to you", the device rep asked me, "the use of your arms, or your legs?" He said that I needed my hands to type, so he would opt for my arms if he was me.
ARE YOU KIDDING ME?
"How can you ask me that?" I replied. "I need my arms to type, and I need my legs to walk. I want both".
Unfortunately, that request would require 2 implants, one in my neck and one in my tooshy.
The doctor chose for me - we were going for the legs.
I've blogged about this in the past. I fought this procedure tooth and nail. But chronic pain has a way of dictating things like daily life. My pain management docs informed me months ago that I had reached my limit of steroid injections in my spine, and was now out of options.
I kept thinking about how I needed to put all of my hesitation aside, pray about it, and be confident that all would work out. A Spark friend gave me a nice thump on the head to remind me that I needed to stop worrying. Stop trying to drive the bus myself, right? Why is that so hard???
Let me walk you through the surgery of 2 days ago:
A team of doctors and the device representative collected in the (already warm) operating room. I was told that I was going to be 'tented' since the risk of infection was high. Call me crazy, but I was under the impression that the team would be under my tent too you know? (party in my tent!!!). But I was the only one being tented; covered from head to toe in a shallow Smurfy blue tent while they dove into my back, trying to get some lead wires attached to my spinal column. I was awake and needed to be present to help them navigate things. This was very tough. I was hot, sweaty, and starting to get very sick from the anesthesia. Even though there were 6 people in the room, I felt very alone under that tent, so I prayed.
I prayed through wavs of nausea. I prayed while the device rep took over to navigate and program my spinal cord device (4 programs), while trying to find my pain threshold limit - all without trying to inflict too much of that pain on me (owie!).
After I was taped and sealed up like a holiday rack of lamb, I was moved to another room with the rep to learn how to use my remote control (my remote control?!).
He 'turned me on' from his laptop, and I felt the buzzing, crawling ants-like feeling rush down my legs to my toes. What a strange sensation. How could I describe this entire experience?
I had officially plugged into The Matrix!
I instantly felt like a Cyborg.
Was I a Bionic Woman? Hmm, not so much. I would have needed to add some false lashes and feather my hair...
Call me Elektra? Oh Lordy, although the push up bra would work wonders, I don't think that all of the tubing and bandages would be concealed under the leather bodice and pants. But I sure would have been a hottie... :)
For this trial period I was warned to avoid all scanners, and the shopping mall entirely actually, since I cannot be near those security contraptions at department store entrances.
Hey, maybe this will keep me from doing ANY holiday shopping damage? Ha!
I was also told to stay away from large electronic machinery and any x-ray machines (dentist, doctor's office, airports, etc.). This part should not be a problem for this next week, but I very painfully found out that due to bad cell phone range within my own home, the connection between my remote control and the device itself was not registering - WHILE I was urgently trying to turn it down, since it suddenly kicked into high gear on me. That scenario was a 15 second delay. Yep, I counted.
Note to self: Stop trying to use my remote control to change the channel on the TV! I swear I did this at least 5 times yesterday. AUGH!
Since I need to keep the remote with me at all times, I had to get creative. I found a new use for my husband's iPhone holster for the gym, go figure
I looked over at my husband last night, and thought about the weddings and parties and special events that we have not been a part of since I got sick. I realized that I not only need to do this trial for myself, but also for the love of my life, my husband.
I owed this to myself, my marriage and our future, right?
Maybe this will help me get back into the world socially.
Maybe we CAN go out to dinner without me literally wiggling from pain the entire time.
Maybe I can behave like a 37 year old woman and have a girl's night out (wow!).
I've strung a lot of "maybe's" along the lead wires currently connecting me to this spinal cord device, like a laundry line between two apartment windows.
But "maybe" sounds a lot better than "never", doesn't it?
I'll keep you posted!
Wednesday, December 07, 2011
One of my Sparkly pals told me that she would prefer to stay home inside of her own little bubble and avoid the holiday family gatherings, since she did not want to be tempted by the treats. I asked if there was room in the bubble for me too, since I felt the same.
There are many who feel that the avoidance is practically self-sabotage, and I do agree, but that does not make me want to climb out of that bubble either : ).
Instead I suggest something sporty and active to fend off the butter filled fiendish treats.
Shoot, take part in any of these events and you'll surely burn off some extra calories too!
Its the Winter - homemade holiday confection - Olympics!!!
Cookie Tennis: When neighbors come to your door with homemade snickerdoodles, be sure to have your tennis racket handy so you can serve up a swift backhand move and launch those suckers down the block. Be sure NOT to snicker...
Oven Mitt Hot Potato: Juggle back those hot cubes of fudge that are so sugary they make my gums want to recede back in horror at the sight. C'mon back gums! I wasn't really going to eat it!
Apple Pie Discus: What a great visual, eh? No need to add a description, just warn the neighbors to stay indoors!
Mini Marshie Archery: Keep that bag of mini marshies away from the sweet potaters and fling them toward a platter used as a target. Fun for the whole family!
Hmm, this might not be the best way to react to holiday fare. Perhaps you're better off reading the recent Spark article on how to survive these next few weeks...
And maybe I should go apologize to the neighbors : )
Monday, November 28, 2011
We weren’t able to travel for this past Thanksgiving to see my in-laws since I have been suffering from a nerve flare in my right hand and both feet for going on 3 weeks now - OY!!!
My wedding anniversary (lucky #13 this year!) was this past week as well, and I was fighting falling into a depression about feeling squashed by 1) tremendous pain and 2) looking at my hand and feet in horror at what they seemed to rapidly transforming into.
Let me tell you how un-sexy this can make a lady feel on those 2 special dates last week – my wedding anniversary and Thanksgiving.
Both should be joyous, and both should be a time to rejoice and celebrate overwhelming love, right?
Instead of going out to dinner or staying in a nice hotel on our anniversary, I sat on the sofa at home, wiggling with my pain, and wiping the flop sweat from my brows often (and trying not to cry anymore!). My poor husband sat next to me, trying to do anything to help. I am so lucky to have him and I know it…
So when my next door neighbor invited us to spend Thanksgiving with her family, I said that I would do my best to make it work, even though I was a bit anxious – ok honestly, I was FILLED with anxiety.
What if we couldn’t even leave the house because nature’s elements were assaulting me? Some days the sunlight, the wind or even the texture of my clothing feels like nails on a chalkboard. What if I can’t eat anything being served? What if it was warm in the room? (temps over 65 trigger my pain symptoms).
What if what if what if???
So I told my inner spaz to chill out, and decided to make it work.
I couldn’t be so selfish and steal Thanksgiving from my husband too, right?
On Thanksgiving I put on a pretty skirt and top, beautiful pearls, some nice opaque tights (to cover my nerve flare in my feet), and did the best I could with my hair and make-up. See, I am right handed and this CRPS flare is in my right hand (of course).
I packed my own dinner, and informed my neighbor that I had too many food intolerances to list, and didn’t want anyone to have to go out of their way. I swear she exhaled a sigh of relief : ).
We were about to walk out the door to the car when I looked at my hand… It was purple and red and swollen and blistered and…… gross.
I grabbed a nice scarf and wrapped it around my hand as gently as possible. This was my only solution. I mean, what if one of her many family members tried to shake my hand? Should I have bandaged it to give them a warning not to reach out?
Would the Phantom of the Opera have done others a favor by NOT wearing that mask?
Would it have been considered offensive and rude to show the painful scars and ongoing damage right from the start?
I was so confused as to what to do – or not do.
I kept the scarf on as we walked in. Her family and friends DID come up and introduce themselves by extending their right hand, to which I swiftly replied, “My right hand is injured, so I’d love to use my left hand if that’s OK”. For those I had met before, I offered more detail about my health when I was asked, and for everyone else, the left handed shake worked out fine.
I did sit myself in the corner of the room when it was time to eat though, since I still hold my fork with my right hand, and I didn’t want to offend anyone once the scarf came off. Let’s just say that my hand can be quite an appetite suppressant, and this was a Thanksgiving feast after all.
We needed to leave pretty much the moment after my husband finished his last bite of dessert, since I had hit my limit with pain, but I MADE IT! I did my best to enjoy the afternoon, and give my husband a much-needed break with friends.
My neighbor walked us to the car and told me that she thought that my scarf was a great camouflage, and she would not have known otherwise. I was glad to hear that. The night was not about me anyway, right? It was about all of us. And I was thankful for that.
As I type this with my right hand uncovered, still swollen and not fully functioning, I am thankful to be able to type. I don’t feel like I need to hide my right hand and both feet all the time, but for this Thanksgiving, I thought it would be best to just take a break from it, just for a little while…
Is that so wrong?
Saturday, November 26, 2011
I'm frugal with certain things, like groceries. I read the weekly mailers for my local markets and try to make sure my kitchen is stocked with good food.
Every past holiday season I have baked and cooked up gifts for others.
Do you know that line about how the gifts you give are often the gifts you want? Well, that crosses over to food as well.
I baked gorilla bread saturated with butter like a cinnamon sponge topped with walnuts.
I baked double death dark chocolate chunk brownies drunk on liquor.
I squeezed enough lemons to make the house smell of citrus freshness for my lemon bars.
Yes, I gave homemade goodies out of love, but can now see how I have also created my own homemade triggers for emotional eating. Wowsers! I have no one to blame but myself.
This year I hit my goal weight with the tools, teams and pals gained from Spark, so I know better than to immerse myself in mass amounts of butter laden fatness, or I will definitely be carrying all of those holiday items back on my thighs.
I think I'll be making infused olive oil for everyone, or perhaps something completely non-food related.
I've just tossed my prized coupons in the trash since I will not be creating clogged arteries inside the ones I love.
Tuesday, November 22, 2011
Let me start off by saying that I am not standing here stamping my foot and bah-humbug’ing Thanksgiving and Christmas at all. I love both holidays, and all of the sparkly lights that come to my mind when I reminisce, but I don’t want anything related to what I have made these holidays into over the years: overeating, obsessing and overkill.
I shared with a Spark pal that I’ve decided to flip things around if you will.
I don’t want to compare this holiday season to the past unless those comparisons involve wonderful joy related things.
*I will not be comparing my current health to how my disease complicates my life this holiday season or in season’s past. And I will not go into a sad dark space about missing my mom and brother for longer than would be considered fair.
*I won’t be over extending myself to decorate the house with 1,000% holiday cheer since it adds to my pain (and glitter is just impossible to completely get out of my rug anyway).
*I will not be baking obscene and ridiculous items of dark chocolate goo to give as gifts, which are always gluten filled (so I can’t eat them anyway), yet obsess about the lingering smells that end up triggering me 24/7, and make me want to eat them anyway.
*I won’t overwhelm my husband, my pets, or my neighbors this year with a plethora of pumpkin spice and fir tree scented candles and diffusers. Who needs a pumpkin headache? That’s just sad…
*I will not wade in credit card debt from overspending on material gifts, even though my other half might feel differently. Not this year buddy.
And now for the things I WILL be doing this year:
*I will be thankful for friends and family who decided to stick around for me and support me, even as my health worsens.
*I am thankful for the community, support and friendships that I have gained since joining Spark this past April.
*I am SO thankful to feel rich in spirit, and (currently) NOT trying to eat myself into the illusion of happiness.
*I am thankful for the 30 lbs I lost with SparkPeople!
*I am thankful for the multiple blessings in my life. The ones I recognize, and especially the ones I don’t…
Well, one little apple spice scented candle won’t hurt anyone, right? : )
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