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!
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?
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