Thursday, January 05, 2012
First off, get your mind outta the gutter!
I saw my neurologist yesterday and proudly made a fist with my right hand. Something I have not been able to do entirely for 8 weeks. 8 WEEKS.
I have had a painful nerve flare in my hand, affecting 3 fingers with no relief until recently. Perhaps the drug cocktail is working.
My neurolofgists reply was more of "meh". I guess he was worried that this was only short lived.
Hey, I am happy to be able to move it right NOW!
So for today:
1) I flossed correctly and efficiently. Have you ever tried to floss one handed? I know that they have those funny flossers with the little handle on 'em, but they weren't working for me (since I am right handed and looked like I was a fish caught on a hook at each attempt).
2) I put my hair in a ponytail. This was HUGE. Just try to get your mane into a pony tail with one hand. Go on, I dare you. Ain't happening (but was highly entertaining to watch, just like when I tried to put on my black tights with one hand - sexy!)
3) I put on my make up with intent and purpose, and not haphazardly (just powder-bombing blush on my cheeks and eyes like tear gas).
Can I just go on a mini-rant here, and tell you how having Complex Regional Pain Syndrome is likely harder for a woman to fight daily than a man? Let me plead my case. If you wear make up, earrings, nylons, perfume (or basically anything flirty and girly), and CRPS decides to take over a certain appendage (or 3), your glam days are put to a screeching halt. Why I actually bought a pair of fake eyelashes 2 weeks ago was just completely ridiculous, since I was not even able to hold a fork like and adult. Back to my list...
4) I HELD A FORK LIKE AN ADULT!
5) I grabbed a pen and wrote my name. Yep, my penmanship still leaves little to be desired, but it didn't look like I was a kindergarten child attempting to keep my letters grouped together.
My hand as of this morning (1/5/12):
Does my hand still hurt? Oh yes. Lots. Is it fully functioning? Nope. But is IS functioning. Does it look normal? Ummm, nope, but it's not as frightening to look at as it was recently.
What would that be, gross but not grossly disgusting? HA!
Here's what my hand looked like a few weeks ago:
It is truly amazing what we take for granted. Even when you think your world is already small by your limitations, your emotional issues, your addictions, or your circumstances, it actually CAN get even smaller.
So hold the hand of the person you adore. Lift some weights (!). Reach for the stars!!!
Just because you can.
And heck, put on some fake eyelashes if you feel like it...
Tuesday, January 03, 2012
I was quite naughty with food recently. Let’s just say that my body is still angry at me for the contents flowing within it…
Post face stuffing, I played back the details of it all. Not only disgusted with myself, but fighting off feelings of worthlessness and guilt. Interlaced between all of that emotional goo, was a sort of soundtrack that I strangely recognized from past months (even years).
I envisioned a concert hall in my mind, and I was about to give a performance – to protest the emotional eating to come after receiving more depressing news about my health earlier that day. I started to raise my voice to plead my case: to love my body and not give in, but thoughts of eating for comfort kept interrupting me, and causing me to lose focus.
That temptation was not about to take a bow and exit stage left. In fact, it started to screech and yell and stamp its virtual foot, in the center stage of my life, taunting me.
Last year when my emotional eating was at its worst, I swear that there was a full house in the audience chairs, bumping up to the stage, cheering on the binge performer to come.
“It’s just 2 cookies!”, they roared.
“It’s only a heaping bowl of sugary cereal!”, echoed back.
“It’s ONLY ½ the cake!”
Wait, ½ the cake?!?!
I shook my head in shame.
The positive reinforcement and encouragement that that I gain here at SP has added some shimmy and shake to my life, and I ‘want’ for new things and experiences.
I want ultimate health – throw some jump into my step.
I want emotional rebirth and support – sing a new song, and sing it loud!
I want more friendships and laughter – things I had been low on, but have received more of both. It’s time to dance!
Have my fiery stressors that trigger my desire to devour and annihilate the pantry contents faded into a tiny bic lighter flame, swaying to the sweet melody? No.
But I have decided to change the tune.
Friday, December 30, 2011
Yesterday I went back to the Pain Center at the hospital for another nerve block procedure to try to take the edge off some of this ridiculous pain. With it being the holidays, only the skeleton crew seemed to be working, and my regular doctor was on vacation. A new doctor was assigned my case, and was trying to get himself familiar with the plethora of paperwork in my file.
This was the first time I had actually seen my entire file. I had only been a patient there for 6 months, but sheesh that file was a fatty.
Visualize a foot long hoagie type of thickness - a healthy hoagie of course : ).
The doctor was about1/2 way through that hoagie (what would that be, at about the pickle layer?), and there it was. A thank u card I had written to the surgical team months ago.
I'm a big believer in thank you cards. The real ones, sent via snail mail. Because once in a while it's nice to get something other than bills, right?
Anyway, there it was.
I was pretty sure that my card would have been tossed within moments of opening.
They really keep these things? Who knew?
I perched myself at the edge of the chair in the procedure room and waited patiently for the doctor to find the current 'cocktail' of drugs for the procedure.
A few minutes later, one of the doctor’s who removed my spinal cord stimulator last week stopped in to see how I was doing. Soon after that, a nurse from when I was there 2 weeks ago came in to say hello. She wanted to thank me for the bag of oranges I brought in for the crew instead of Christmas cookies and fudge-y goo.
It was not my plan to get to know these people so well, believe me.
You don’t want to become a frequent guest at the Pain Center like you would accrue Starwood Hotels points - since I always need to be awake and present for my various procedures = no mint on my pillow. No frequent flier miles here - unless I was being administered a lot of heavy drugs, and THEN I would feel like a frequent flier, right? Ack!
I would have preferred to be in a dress and heels, out with my wonderful husband, enjoying each other’s company and enjoying a glass of wine. Not worrying about the looooong list of details that need to come into play perfectly (and I do mean perfectly) for me to look and behave like a mostly normal, healthy person for even a short amount of time. But for now, this is my lot in life.
But this blog isn't supposed to be about me me me.
There are so many people from the medical community who truly deserve a thank you (or a bag of oranges) for caring for myself (and likely you) at a time of two in 2011.
So I ask, have you thanked your medical professional(s)?
If you have had your teeth cleaned, saw a specialist about a hand injury (AAACK I mean you, feel better!), met with a registered nutritionist about re-vamping your diet, or shoot, even (gasp) survived your annual physical, be sure to thank the medical professionals involved in your life. Sometimes they really appreciate it : )
Wednesday, December 21, 2011
I recently completed 7 days of a spinal cord stimulator device. I can finally exhale.
As of this moment, I have decided not to have the surgery to permanently implant the device in my body.
Days 1-3 were so-so. Frankly, I simply could not get past the back pain from the procedure itself to focus on the electrical pulses rhythmically buzzing and crawling up and down my legs in an effort to ease my chronic pain.
I had 4 programs - my own playlist if you will. But the response time lag from my command to the remote control and the response of the program's intensity really never got any shorter than 10 seconds, which made for some involuntary yelps and shrieks numerous times each day. A genuine laugh, sneeze, or a simple cough was a shocking experience this past week (pun intended). A cattle prod comes to mind when I think back to it. Owie...
Days 4-7 just plain hurt. The device rep called daily to check in, and wanted to meet up with me over the weekend to see if he could help. We sat in the hospital lobby as he literally plugged me into his laptop. For all of you sci-fi geeks out there, this was surreal!
Unfortunately, things just kept getting worse. Each bump in the road, and even a support pillow behind my back were just too much to bear. I pretty much 'hovered' in my chair, or lay on my side. I was one cranky, sleep deprived (and electrified) woman.
On Monday I went to the Pain Center to have the leads on my spine removed; to unplug from the machine, etc.
After some initial scans, the doctor confirmed what they had feared, the leads had crossed over each other, and one of them possibly flipped over (belly up I assume?). That explained the jolts of pain that made me feel like a moth caught in that bright blue lantern on a summer's night.
The doctors were disappointed - They had hoped they would be able to document how this type of pain therapy actually worked on someone with my condition.
The rep was disappointed - He really tried to create helpful programs and provide me some relief for life.
My husband and I were disappointed - We were entertaining the idea of actually going on a date, or perhaps a night away from home. Maybe even going to see his family TOGETHER for the holidays.
I continue to be such a rare case that the docs asked if I would agree to be their case study for their next Pain Management Focus Group.
I had already agreed to attend an upcoming event at the hospital across from the Pain Center for their Conference dealing with rare cases as well. Look at me, so popular!
Part of me feels like a circus act. Being called 'a rare and acute case' is not always a nice thing to hear, am I right? Perhaps I could just focus on the 'rare' part, like a beautiful scarlet gem, or a shooting star?Sounds much more glamorous don't you think?
So what's the plan now? Well, I am scheduled for another epidural procedure next week, and I hope that provides some relief for a bit. The doctors are looking into some type of pump device to administer drugs internally. Hmm, would that make me my own personal drug dealer? Ack!
Perhaps I will go through another 7 day trial for the device that would be implanted in my neck to help with my limb pain, but not right now. I need a break.
All I wanted to do as they discussed my case (in front of me of course), was to go home and take an obscenely long shower. 7 Days without a real honest to goodness shower was punishment enough. I felt like I WAS my own petri dish!
My husband took me home and pointed me toward the shower. I scrubbed (gently), I lathered, rinsed and repeated. I got out of the shower and gingerly put socks on my very swollen feet. I put wound cream on my painfully cracked right hand. I tediously forced my hands to comb my long hair and try to look decent fort a very supportive husband (and for myself of course), in the next room. He just wanted to hug me; what we call a marathon hug to make up for the past 7 days.
I was so thankful to be back to my pain ridden self. Funny how that works.
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!
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