Tuesday, October 21, 2014
...down the peach fuzz of my back. From the base of my head to my tailbone. The docs used what they call 'pink tape' (it's actually peach guys!) to anchor the wires and tubing from a long term epidural in my spine.
I told the nurses that they should complete the task and give me the full body wax, rather than just the peach-fuzzy reverse mohawk, since my punk rock gal phase was decades ago, ha!
BAH HUMBUG GRUMBLE WARNING: I've was booted out of The Joint 4 days early due to potential infection (heartbreak!).
So the docs shut off treatment far too early. Only made it 1/2 way through before things went south.
Disheartening to see progress, to actually SEE progress, and have it peeled back rapidly like a roll top window shade - revealing all of the dusty dirt covered items of illness.
My disease quickly reverted back to its not-so-adorable status. My body revving up its white blood cells to fight infection, turning me into even more of a heat generator already (hooey, it's HOT in here!).
Taking temp often, checking swollen areas of my back every few hours. Anti-inflammatories 'round clock. Blah blah. All on top of my constant chronic pain. OY!
Silver lining: this procedure and treatment protocol seemed to help keep my feet alive. That's insanely amazing! How often do I whine about treatments bombing? A lot!
Poopy squishy center of the silver lining: my feet and parts of legs immediately snapped back to their sickly oxygen-robbed colors and flavors. Back on track toward a sad death.
Next steps: break out of can of silver spray paint and 'silver line' my days until I can take advantage of doing this jam session again - maybe 8 weeks. Then Operation Save My Feet is back on. Gotta stay positive!
And now I am on to phase 2 of everything: heal the new wounds inflicted on me, settle into being home, strive to do some type of exercise regimen ASAP. Even one bicep curl is better than nothing.
And as the song goes from Social D, for now this is the Story of My Life!
Monday, October 13, 2014
Are you a foot person? Love to get a pedi and pick some adorable polish? Umm, then this blog might not be the most appealing (sorry!).
I don't have toenails to paint, and quite frankly can't handle anyone touching my feet due to pain. Oh boy, my feet certainly are NOT cute either. Swollen. Cracked. Flaming red and hot to touch in most areas, purple in others. My little piggies are ulcerated and infected. Poor pups are quite unhappy.
I miss my cuter feet. Shoot, I miss shoes! Ahhhh, I will still dream about them though. Mmm soft leather boots...nice! 😴
Met with my Pain Clinic doc 2 weeks ago as a follow up to my recent trial of IVIG therapy. Long story short: IVIG unfortunately didn't do anything for me. I reeeealllly wanted to 'will' it to work. Honest and truly! But I struck out with both rounds (poop!).
I thought that the doc would just confirm the IVIG stuff, and then I'd get wheeled out of the clinic by my hubbie to head back home.
But things got serious quickly once the doc looked down at my legs. Sobering news: My feet are kind of dying. She actually said that (Ahhhhhhhhhhh!).
She wants to admit me to the hospital after a procedure to place an epidural in my spine, numbing my legs completely. Then the Pain team will flood my legs and feet with vaso-dilators (medications to open my veins) to get blood to my feet, and keep them alive. I will need to have the epidural in place for a week to let those drugs work, since the meds will trigger very painful Ethel flares.
Her argument was that if she could keep my legs numb and force circulation within, then my feet should hopefully recover a bit. Unfortunately for me, the leg/feet CPR (if you will) is only a short term solution. If I don't do this... then yeah, dead little piggy toes for sure (again, Ahhhhhhhh!).
Not going to lie, it can be challenging to get through certain chapters of my personal book of life.
Experimental treatments, consistently plagued by side effects.
Increased pain directly linked to trying new treatments can be particularly harsh, since there's that little voice that whispers that I brought this on myself.
Failure of treatments and therapies for years now.
Coming home from the hospital usually worse than when I went in.
It can be a heavy load!
And don't forget to dog-ear the corners on some pages as a reminder to allow yourself to shed some tears and experience the emotions of that recent roller coaster ride too.
Seems much easier to close that thick heavy book and choose a lighthearted rag mag to read instead at times.
So here I am, waiting for the hospital to call me with my procedure time for tomorrow morning. Then I will need to count backwards 12 hours so I know when to stop drinking water. Lord knows I don't reeeeally need to worry about the food part.
See, while my heart says, "Let's do this baby! Let's see what happens!", my emo's scream, "Nutella and Cookies are the solution to life's problems!!!". Ohhhhhhhh...
I crashed and burned on the food already in the days leading up to my procedure tomorrow, but I'm not going to dwell on it.
Hmm, the emo eating was a 'fluff' chapter that would have been better left out of my book o' life huh? Perhaps like marshmallow fluff? Wait, no! Not that! Hee Hee.
Time to pack for trip to The Joint. LOTS of undies this time in case they extend my stay again. Snicker snicker... : )
Operation Save my Piggies (and feet!) has commenced!
Prayers, good juju, healthy energy. Whatever you can fling my way would be appreciated. Just not junkfood. Don't need anymore of that. Hrrrumph!
Wednesday, September 24, 2014
Internal questioning dialogue:
Do I count the full amount of exercise minutes even though I had to sit in a chair, instead of standing up to do all of the exercises?
Am I being a cheater?
I only logged 8 min of a 10 min workout today since my foot cramped up so badly that I had to practically stop, drop and roll to get the cramp out. Seemed logical to only log 8 min since the foot cramps are out of my control. Done. No biggie.
Then my mind wandered to physical activities that kind of physically attack you back. i.e. Mud Runs, Gladiator races and other fun runs which are littered with challenging obstacles.
My life with chronic pain is in fact littered with challenging obstacles!
Some days I have use of my hands. Most days I don't. Some days I can put weight on my toes when I walk. Most days I can't due to blisters and ulcers.
I found myself doing exercises from the Spark video library recently [LOVE those things. Thank you Spark for making them free!], and I was getting frustrated with myself when I could not complete the video I had started. This was becoming a common occurrence.
I questioned whether or not I was being a greedy exercise minute hoarder while logging onto Spark.
Here's my conundrum: if the Spark 10 minute seated arm video involves an exercise that my fingers just cannot comply with (Eeks Coach Nicole, you want me to raise my weights over my head when my fingers don't want to hold onto the measly 1 pound weights? That would be a disaster!). So I decided substitute another exercise that I could do for that minute until the exercise rotation changed (bicep curls).
Am I cutting myself short of truly earned exercise minutes due to the swap? It certainly wasn't a healthy goal to turn myself into a red headed unicorn with a Mt. Fuji sized bump on my forehead. I was fully aware that I would have dropped that weight since my fingers were 'no work-ey' that day. So I did something else.
In the wonderful words of the beloved Bernie Mac: "let me break it down like a fraction":
The potato sack race of an obstacle course dictates that one of your legs is compromised, right? I can totally relate. Some days demand hobbling around on one leg since the other hurts too much.
Carrying your partner over your shoulder or doing a Heavy Haul on a Mud Run slows you down considerably, but builds your endurance and strength, right? I go through seasons of swelling and edema in my body (umm, like now). That's additional weight no one wants to schlep around. But you have to try!
Fighting your way through a mud pit that has a vice-grip of your feet (and running shoes! Duct tape them on people!) can't be done at Flo Jo speed. That obstacle wouldn't be discounted, but rather appreciated for the intensity of it.
Constant edema and pain certainly make me feel as if I'm dragging around cement filled feet, kinda like the mud. Eeew.
Ladder walls can't be done gracefully unless you are a giant octopus. Pretty sure I look clumsy at times during many exercises, but I'm always striving for good form.
I've done fun runs and obstacle course races before my illness surfaced to join the party of my life. I still had to train for them, regardless of how I performed come race day.
I try to never sit still if I come up against an exercise (or two, or eeks, even three!) that Ethel says 'no' to. I'll do some shadow boxing or simple isometric exercises (squeeze baby, SQUEEZE!). Maybe a few stiff legged dead lifts and then try to touch my toes (not actually TOUCHING my angry pain-filled toes though, good grief. The horror!). Catch my drift?
Do I deserve all of the minutes I log, and give myself a generous (gentle) pat on the back for a job well done?
I am doing my best with each workout. I am being actively creative if that's even a term.
Or should I nix any minutes that I am unable to do the exact exercise move on the video, even though I'm modifying?
Something to ponder...
Check her out. Olive is flexing her puppy muscles.
Wednesday, September 03, 2014
As Ricky Ricardo says, "lemme splain". But first I wanted to share why I needed to give my body a fighting chance. See, apparently my home has it in for me, really.
My pain has continually crept up because of a few things that were out of my control:
Our very specialized (and pricy) 2-year-old air conditioning system flopped and basically died. It's been really warm this summer in CA. AC is critical for my daily life.
My husband left a puddle of water on the floor and forgot to clean it up. Of course I slipped in it later, jabbed my fingers into cupboards, cracking open one of my life-saver sized ulcers. Gross, disgusting. Blood everywhere. Ruined some clothing and a nice towel. Classic me.
A couple of days later I stepped on a straight pin that was sticking out of the bathroom rug. Accidentally fell off my husband's new shirt when he was trying it on. Whoops.
Waddled into the kitchen to get some water the next day and felt a searing burn under my left foot. I was stuck to a dried puddle of lime juice from an accidental spill by my beloved the night prior. Another accident left behind unintentionally.
Icing on the cake: that same morning I went to take a shower and suddenly both of my feet felt like they were sizzling once I stepped into the shower stall. Hubbie forgot to tell me that he sprayed bleach since he was going to scrub it later.
Was my husband trying to kill me? No, not at all I'm sure. I was a clumsy goofball before my health tanked, believe me.
Useless insider info: I was never to be trusted around sharp knives or garbage disposals. Seriously!
Thank goodness there weren't any super stealthy ninja weapons in our house, right? I'd have been impaled on a pair of nunchucks for sure...
But those teeny things kind of pushed my pain into overdrive. And the lack of air conditioning in our living room added insult to injury (err...injuries?). The finger that I cracked open and my feet are still absolutely throbbing and angry days later. Silly.
My body was begging for some pain relief treatment in-hospital, but I had an opportunity to try something new - and had to sacrifice potential pain relief to do it.
Have been talking to my doctors both at the Mayo Clinic and here at Stanford about doing a trial of IVIG therapy. I was told that I am the first EM patient to undergo this type of therapy from a Stanford. Yay me. Where's my sash and trophy???
I've read about people with certain autoimmune diseases achieving amazing results after IVIG. Since I don't respond well to any of the treatments available for EM, I thought this might be something fantastic to try. They all agreed.
To keep it short, IVIG is a treatment via IV that contains antibodies collected from the plasma of healthy donors. IVIG is not used to treat pain, but can help the body to heal and prevent future internal immune system warfare.
Maybe it will slow down my body from continually triggering its own internal breakdown for a few weeks. A 'reset button' for my immune system. I'm in!
Wouldn't it be supercalifragilisticexpialidocious If it worked?!? If I could FINALLY make better progress in healing from my biopsies from the Mayo Clinic in July? Paper cuts might heal faster, bruising might not be so severe. And then there are those threatening puddles of lime juice...
I'm slower than molasses when it comes to healing. Shoot, I'm slower than molasses in the Midwest - in the middle of winter - poured onto an icy cold street, actually. Wouldn't it be fun to change that around for a bit?
Oooh, and get back to a more mobile life? To dust off my workout DVDs and be able to confidently hold a pair of 5lb weights to feel the burn baby! Nab back some sexy muscle definition? Nice. Let's go doc, I've got plans here!
I have to remind myself that I did not come into the hospital because I was in a lot of pain. Gonna have to suck it up since the docs don't want to mix pain management drugs with IVIG.
Perhaps this treatment will communicate to all of my teeny tiny immune system tidbits that they should hold hands and be friends instead of enemies. You know, sing a round of Kumbay-ya around the burning campfire of Ethel that burns so bright, right?
Oh yes, the underwear wail [Ha!]. Initially this was supposed to be a single round of IVIG therapy, and should have taken three days max. Since I haven't had any of the scary creepy side effects thus far [anaphylactic shock being just one of those. Holy Crimini!], they decided to try 2 rounds of IVIG back to back. That translates to a 5+ day stay. I've got an underwear crisis people!
Time to recognize my silver linings and wrap things up.
I'm in a private room again due to the temperature demands of my EM/Ethel. My room is nice and dark. The AC works. I've got ice packs all around me and the staff is great.
Bonus: I can see the Life Flight helipad just outside my window. Really, it's so freaking close! Just a tad too loud for my headache since these life saving heroes have been busy. Entertaining though, so I'll just get past the noise. What an amazing sight!
I wonder if Amazon prime will deliver cotton undies to the hospital? Why is this funny?
' Nuff Said.
Thursday, July 24, 2014
As the bubbling, gurgling tar-like funk starts to recede, I can now see remnants of my true self underneath (phew). And I am able to better reflect on the shiny gems set throughout last week's Mayo Clinic trip, not just the pain and the tears.
To kick things off, the flight attendants were made aware of my disease and my special needs for travel. They were very attentive, and brought me ice packs often. That was great.
There was an issue with the air conditioning where I stayed. They did all that they could, but they were simply not able to get the air-conditioning to operate with the demands of Ethel. I needed the room to be at a maximum of 60░F. Honestly I would've preferred it to be lower than that, but commercial air conditioning just can't compete with those demands 24/7.
Unfortunately they couldn't get the temps down below 70░, and there is currently a heat wave going on in Minnesota [90░ are you kidding me?], so I was in a tight spot. Massive swelling, bloody noses and lots of pain. Kind of scary since the bloodwork, biopsies and the pain-filled bits that was to come with the Mayo Clinic had not even started yet.
The maintenance team actually hunted online for some type of DIY contraption to cool me down. It looked like something out of an old I Love Lucy episode, but oh my goodness it actually did work! I just wished it had more force, since the R2D2 looking contraption needed to be parked about 6 inches from me. But still, I'm blown away (Har Har, blown away) that these guys even did this for me. Another blessing.
In case you're wondering, this is a bucket from the hardware store, and inside is a water jug that was frozen solid. On top is a tiny desktop fan to push the cold air out through the PVC pipes. Pretty creative huh?
The lead doctor on my case at the Mayo Clinic decided to let us come home a week early, and said that she would work with Stanford Hospital out here in CA when my testing and surgery results came back. *Wow*
She understood how hard things were for me, and how much pain I was in. Allowing us to come home earlier meant a much cooler climate was on the horizon for me, as our air-conditioning worked better than what we had currently in Minnesota. We were not expecting to come home days early, so that was yet another huge blessing.
The airline agreed to waive the penalties involved in getting us home. Wouldn't you know, there is a Mayo Clinic discount available.
When we got home, my husband went to go pick up our cat JitZu from where we were having her boarded. We were told that someone had anonymously paid our bill. That was not cheap. Wow, we were so thankful...
The next morning my husband drove across town to pick up our dog Olive from where she was being boarded. The owners told him that they were not going to be charging us the $450 fee, since they knew that we will were struggling with my illness on all levels. They said that they wanted to help me in some way if they could.
Again, what a massive blessing.
I had mentioned to a Spark friend that even while at my lowest, I still felt as though God was carrying me through. And I can look back and definitely see that sprinkled throughout the entire trip now. Thank you Lord!
Incredible (gentle) hugs to you all for being such pillars of strength for me. Directing your prayers and strength when I truly needed all of them was not taken for granted. YOU are blessings in my life!
And the icing on the cake, look what was parked outside across from the hospital. It's the Wiener Mobile!!! Talk about getting a great laugh when one was truly needed. My husband pushed me through the lobby in my wheelchair and we saw this last week.
Of course I had to ask if this was the new hospital shuttle. Sadly, it was notů
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