Thursday, May 17, 2012
I limped slightly into yesterday's nerve procedure for my left foot, but was excited for the same great results as with my right hand. No room in my mind for folding on this round. I was allll in.
We checked in at 5:45 a.m.
I got the local anesthetic this time at the request of the doctors (and some Sparker's suggestions). No problem.
They seemed really happy with the procedure, and by 7:30 AM I was wheeled to recovery. Wahoo, right?
5 minutes afterwards, I knew something was off. My right foot ignited with fire pain and redness, and just got worse. I was shaking. This was b-a-d.
They taped ice packs to my foot to cool it - no luck. They tried applying ice water soaked washcloths, and swapping out more McGyver'd ice pack shoes every 10 minutes too - no dice. My EM started to go nutzo, and when they were checking the incision site on my back for a reaction, I realized my entire backside was sweaty. I was on a memory foam gurney. EM folks can't touch that stuff since it insulates heat and causes EM flares. This definitely was not helping...
Next, opiates came into the picture, or the IV. I got sick from them pretty quickly (yuck-o). Then I got pumped full of two types of anti nausea meds (since the first one was not working).
Once I was loopy from everything, they hooked me up to an IV infusion of lidocaine, plus a topical lidocaine cream. They needed to cool things down quickly. I am so thankful or their efforts.
All of the stuff above was taking place while I sitting up in a recliner chair - because of that d*mn memory foam bed!
I felt like I was in an airplane seat, and talking to myself from the drugs. My speech was slurred for hours and I was not myself.
The docs suggested admitting me into the hospital for a couple of days and get a slower infusion of lidocaine, but I just wanted to go home. I had been in the highest # on the pain scale since 7:30 a.m. (it was now 2:00 p.m.).
I wanted to lie flat, and in my bed.
They let me go home as long as I promised to continue taking some heavy nerve meds, and I was to make a decision by 8:00 pm last night (when the meds should have shown some effect). They warned the ER that I might be coming, and prepped them on my situation. Thanks but no thanks.
I fought to stay home last night like and old lady attached to her cardigan sweater.
It was tough last night, and today has been challenging too. I am typing this while lying down, with my left foot greased up in lidocaine cream and elevated over my heart.
Maybe I will be more limber after this passes? : )
Perhaps I made the wrong decision to get this nerve procedure, since I feel like I took two steps backward with my CRPS. The pain is as high as when my CRPS surfaced last Memorial Day. How ironic since that one year anniversary is fast approaching.
We were told that this awful pain should fade in a few days.
I'm betting everything on that.
My husband cancelled a much needed trip to see his family (again), and part of me feels rotten about it. I'm missing work, and completely overloading my coworkers (again). My DH also missed work to care for me (again).
I'm fighting the feeling that I have been dealt a bad hand.
But this year I have solid resources that I am reminding myself to pull on. I have dear Spark friends to lift me when I feel I cannot stand (like now). Spark friends who are actually willing to swap out a part of their workout plan until I can hop back in and join them (THANK YOU!). I have a pain psychologist who is teaching me tools to deal with my pain, not dwell on the long term, and conquer today ONLY. This is not easy!
I am showing my 'tells'.
I felt the prayers and good thoughts from all of yesterday. I cried a lot from pain and fear, but I kept going. I made it through, and did not eat my emotions (thank God!).
I'm trying to stay motivated to get well enough to workout, to keep my eating sane-and Spark everyday.
I've been dealt a higher card and I am going to use it! It would be un-lucky not to...
Monday, May 07, 2012
To follow up on my last blog, I have a SUCCESS to post.
My right hand hand now been functioning consistently for 9 days now.
I had a few good days here and there this past January, and I was happy for them. But 9 days back to back? Not since last October.
I did joke a bit about feeling like the bride of Frankenstein after being told about the nerve procedure initially (via my neck). And now that it's over and the 'cocktail' of drugs have saturated things, I think back to Gene Wilder's character as Victor Frankenstein (Fraaaaaank-in-schtein!) in Young Frankenstein, standing over The Monster screaming, 'It's aliiiiiiive!"
I am right handed, so my penmanship these past few months have been atrocious. Pointing, holding a fork, make-up application (e-gads!), extending my hand for a handshake, using my dreaded blackberry for work after hours, and MOST importantly, holding my husband's hand; touching those that I love (even petting Olive) was on hold.
When my hand was not active, it kind of curled up like a roly poly, and turned odd colors. It was very uninviting.
My hand was a figurative porcupine. It just screamed, 'don't come near!'
But this past weekend I didn't just sit on the sofa as my husband worked on projects or hung out at home. I helped! I did stuff!
We re-purposed my dresser and made a puppy kennel area with storage that didn't look like we kept our precious Olive in a milk crate at night.
I begged and pleaded for DH to give in to my zany idea. This was tough thing to do, and required much energy spent making creative hand gestures with my right hand like Vanna White in Wheel of Fortune. After my he agreed to my plan, DH removed the drawer tracks and support slats as I..... watched!
This would have been a risky first project for me, so I delegated. Even better! : ) Now the top drawers hold leashes and extra toys. Success!
I also fired off some very word-y emails, since typing was so much easier to do without stabbing at the keyboard laboriously. I apologized to my friends in advance. Ha!
When Olive brought me her ball, I was able to throw it. Wahoo! We were both pretty happy about that.
I even cradled our little Olive for the first time in a long time. Important to note that I took this photo of my husband holding her, but you know the idea.
I chopped! I sliced! I shredded queso! I assembled the guts of a healthy Cinco de Mayo celebration at home for the two of us. A small feat for many, but a BIG DEAL for me. And it was a veggie dinner, which I love. It's rare for DH and I to eat the same meal and both be pleased. Wahoo for that!
Yes, I confess I ate too much of our little feast. I guess I Cinco de Mayo'd myself, eh?
So I will need to work that off this week. But that's ok since I can hold my tiny weight in hand with more control right now, and that HAS to burn more calories, right?
Yes, this is temporary, but when it fades and I lean toward discouraging thoughts, I will remind myself of the things in this blog. Things that I have not been able to do for too many months. And that will carry me through to the next nerve procedure, and the ones after that.
These procedures are considered to be a form of pain maintenance since I do not have a cure (yet).
I'll keep taking that paper # from the machine and wait my turn to get those weeks of relief that this has provided me thus far. No complaints!
Sunday, April 29, 2012
Well, that's what I think that scent was anyway. Every time I feel the soreness in my neck, I tell myself that I was in a mythical world recently, and a cleanly shaven, pasty-pale, rail-thin vampire was simply introducing himself to me. We all know that vampires don't shake hands, right? : )
My nerve procedure last week went pretty well, or at least I think it did. I am supposed to see some results in a week or two (I hope). I am extremely impatient, so this is a tough one for me. I lost a lot of the use of my right hand this past October, and it has been holding out for better things until now, I guess.
As for the actual vampire hand shake last Thursday, that only took about 30 minutes. We checked in before 9:00 a.m., and were home by lunch time.
Before we headed out that morning, I was looking for my Pain Center outfit. I actually have a specific pair of yoga pants, soft T-shirt, and wire-free undergarments set aside for my procedures. I have learned the hard way that zippers and buttons are not my friends while trying to set the world record for speed-changing - from behind the thinly veiled privacy curtain around my bed - all with the nurses and my husband exchange small talk about me (while standing 6 inches from me). I was looking for my monkey slippers and saw something in my closet. It was a shiny formal purse. Ladies, this question is for you. Don't we all have at least one fancy schmancy purse, meant to be brought somewhere wonderful like a nice dinner or to see a play? Well, I don't know about you, but I haven't gone to any place that demands extra rhinestones and an unflexible (and flammable) hairstyle for years. I thought it was about time to get some mileage on this purse!
I put my wallet, cell phone and chapstick into what was now a new part of my pain center outfit, and we were off. Come on now, you can't tell me that my evening bag doesn't scream fashionista, while sporting that uber attractive hospital gown (opening in the back please!), right??? Thought so....
Since my Erythromelalgia keeps me running hot all the time, I packed a real live Spark Goodie from a spark friend, and used it often before my sterile 'limo' cruised down the corridor to the procedure room.
I've decided that the next time I do this, that I will let them put me out. I didn't really think it would hurt that much, since I was used to the other nerve pain procedures via my back. Sometimes ignorance is bliss! The anesthesiologist kept asking me if I wanted the local, but I would just flash a ridiculous smile and decline. Maybe it was the gold bag...
Once everything was set up, with my head cupped in a strange salad bowl-like thing, and blue paper covering most of my face, doctor #1 turned on some Norah Jones, and started on my neck.
I felt like I was underneath a giant plastic coated metal spider while on that table. It was stressed often to me how important it was that I not move. So, I ended up whimpering a lot (yowsers it hurt!), but nope, I did not move. It felt like the two doctors were kneading pizza dough inside of my neck, and it was a bit noisy (yuck!). Once it was done, I felt like I had a smurf in my neck, and my voice was raspy. My neck was very tender later, so my DH was not able to get the pen marks off of my neck until the next day. He did get most of the iodine off though, so at least I didn't look like I had a strange encounter with a spray tan canister! The smurf and the rasp remained for a few days, but as of today, my voice is almost completely back.
My body may not be 100% anymore, but it is still amazing to see how much better I feel only 3 days later. Yay body!
Thank you so much for your kind thoughts and well wishes. I know that all of the prayers and virtual hugs kept my spirits high. I'll be scheduling another vampire nibble in the next few weeks (hrrrumph!). While I am not particularly excited about it, I am eager to see if this helps lift some of the iron blanket of pain off of my world, even just long enough to officially take my gold formal purse out for a real meal with my husband.
I'm not picky. We could be eating chicken hot dogs and baked potatoes for all I care, but that silly formal bag is coming!
Wednesday, April 25, 2012
I'm scheduled to get another nerve procedure tomorrow morning. I've been in complete denial about this since writing the date down two weeks ago. Why? I need to figure this out. Well, I will apparently get poked (deeply) in my neck to find a specific vein or artery (?) and inject a magical potion that will hopefully help with my chronic pain.
I guess I am a bit wiggly about it. Well, I am wiggly anyway I guess, due to my health. But in the words of my Spark pal Cannie50, I am having my own personal earthquake!
Currently my attention span is like that of my puppy Olive:
What time do I need to stop eating/drinking again?
Ooh, a shiny pair of earrings on sale now!
I should wrap up my boss' travel in case I need more time off.
Wow, Peet's Coffee is on sale at Safeway! Need more caffeine! (no, no Bren, you REALLY don't!)
I need to ask my DH to get some meals together in anticipation of being couch-bound post-procedure.
I smell popcorn! Who is making popcorn?!?
Oy! Ok, let's re-group.
I've done numerous procedures to try to alleviate some of my pain. I am a pro at this. Why is this causing me to register a 4.8 on my richter scale? What is the deal?
It's definitely due to the location of the procedure. The Pain Center docs will be working in my neck for a bit. Creepy.
Think of your neck as a nice slice of lasagna if you will. From what I have (finally) read, they will be going pretty deep. I guess that would be the ground turkey layer of that lasagna...? Can't they do this through the nice cheesy top layer without messing with the wonderful stuff below?
This is not an inviting feeling for me. I don't want someone digging around in my lasagna.
Plus, there is a chance of seizure since the area is near my carotid artery. I was told that the doctors know how to stop that seizureif it were to happen. Ok, I guess?
I've decided that I need to use my (often twisted) sense of humor to get me to the Pain Center tomorrow in good spirits, especially since this procedure is only to treat my right hand. I will still need to book 3 more procedures for my other appendages, and then repeat, repeat, repeat.
So far I am looking for stickers like the Target bull's eye logo to slap onto my neck before my appointment. Wouldn't that be just awesome?
Or, perhaps I could use a scented magic marker and write a large 'X' to mark the spot?
I'm glancing at my office supplies as I type this, and wondering how I can use those nifty 'mark here' arrow stickies to pile on my neck, all pointing to the right area.
I AM making myself into a literal dart board, right? Should I bring darts? I could just hand them to the doctors as I enter the room and then stand up against the wall.
Maybe bring in a plastic samurai sword? Some fondue skewers?
In all honesty, I just want this to help my pain, with every fiber and nerve ending in my being.
Just for a little while.
If I could cross my fingers and toes for good luck I would.
Would you do that for me please?
Sunday, April 08, 2012
I am a lucky Spark gal.
Yesterday I got to meet TWO awesome Spark Pals.
I laughed! I giggled! I probably snorted.... : )
Thank You to Cannie and Mamadwarf for making my day!
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