Wednesday, February 29, 2012
I have been meaning to post an update blog, but a lot has happened. And that "a lot" has affected the use of my hands even more. My husband refers to this type of situation as a cr*p sandwich. Forgive me, but it does seem appropriate!
We spent about 4 hours at the research facility clinic on Monday since my health issues were screaming bloody murder with a big nerve flare this last Thursday.
I got another ECG, the usual blood pressure tests, etc. No big deal. But once they started to really look at the lesions on my hands, things changed a bit.
The doctor examined me and then called in a cardiologist to administer nitroglycerin (minty!). Then I got to see their rheumatologist (poke poke squeeze, OW!).
All three of my medical musketeers gave me a discouraged looking face and a somber head shake. It's never good when a doctor says, "oh no", let alone all three of them.
Come on guys, I need good back up singers here to get me home!
All of this because one of them blurted out that they were trying to save my fingers. Ok, now we were a bit freaked out.
Next they gave me a cortisone shot, and now I have a small pile of Px's.
So what do I have in my bag of tricks? Lots of aspirin, nerve drugs, prednisone, nitroglycerine and something else (can't remember). My brain???
My wonderful hubby made 2 trips to the pharmacy to get the new Px's, and even made sure to go get me some silly band-aids to go over the nitroglycerin cream (Toy Story!). The only sour part of that great deed, was that he also came home with a giant bag of Reece's PB cups and TWO boxes of Swedish fish (which I love).
I asked him why he strayed from the list (Lord knows we always send them over with a list for a reason, right?!), but he said that he just wanted to get me something to make me smile. Aww...
I had to return the EM drug yesterday. And it WAS working too. I had more confirmation of that when I was able to wear my shoes for 3+ hours at the clinic! For people with Erythromelalgia, our shoes are always off. ALWAYS. That's a key symptom of EM.
The facility director called us later for my exit interview. She said that they were all a bit down in the dumps that I had been removed from this drug trial. One of the nurses told me later that when the director hung up with me, she cried. That makes me even more sad!
They tried to file for something called a 'compassion', where the drug company ideally gives me the drug to use at home while it is still in the testing phase, but they won't. I truly appreciate the effort though. It's too bad that my body was not playing well with others.
So now I have daily appointments with both the rheumatologist and the clinic doctor at 9:00 AM to check my hands. Part of me feels very privileged since it take months to get in to see my regular rheumatologist back home in CA : ).
But I just want to go home. I've wanted to go home since last Thursday, but we are waiting for the 'thumbs up' from the doctors.
Until then, I am not cleared to fly anywhere or leave their care.
Boy, if that doesn't that make me want to go home even more; to my own bed, to see my furry Jit-zu kitty and Olive the wonder puppy. I want to eat my hubbie's grilled chicken and veggies, and smell the cold ocean air on our front porch.
One of my spark friends told me to think about the things I won't miss from that drug trial.
I am pleased that I don't have any more pain induction tests.
Hey, no more tinkling in a cup, flashing my chest for all of those ECG's, or blood draws either!
Did I mention that I would bribe the nurses with gum if they could get my vein in the first stick successfully? It really worked! Orbitz is like gold!
Let me give you the visual I'm looking at currently in the mirror...
Fabric gloves to protect the lesions on my hands from opening, Toy Story band aids, my hairstyle a bit off (let's see you try to put your hair in pony tail without using your fingers), and crooked penciled in eye brows (gotta have functioning fingers to draw those puppies on!).
As for my insides...
Belly contents of bad hotel room coffee (clearly an offensive crime right there), too much sugar-free gum (to dilute the metallic taste in my mouth from the nerve drugs), and daily meals produced by our mini microwave.
Note to self: Brussels sprouts cooked in hotel coffee mugs within the mini micro make the room smell foul! My DH was horrified as he continually waved the hotel room door to dilute the noxious cloud, Ha!
So now we wait for my bod' to heal enough to tolerate the pressure of the flight. Can't bleed out on the plane like some scary tv episode.
I only lasted 8 days on the drug trial. We've been waiting 4 days to go home.
I know that I was meant to do this trial though, if only for this short stint.
I feel blessed to have been a part of it, but am so sorry that my current health drama would not allow me to complete it.
This is usually where people sign off with something like, "well, at least I have my health", right?
Well, I don't.
But I do have a fantastic (and extremely handsome) husband as my support system, as well as my real world pals, and all of you Spark friends to keep me moving toward a cure.
Monday, February 20, 2012
I can't really spill the secrets of this trial, other than to tell you that a small # of people across the U.S. were asked to be a part of a new drug trial for a rare neuromuscular / neurovascular disease. Only a handful of those were accepted to the trial (myself included).
I packed the necessities: Protein bars for emergency meals, comfy clothes for daily tests, lipgloss, and my monkey slippers. Oh yes, that last one was the most important part. Gotta add some silly to the serious whenever possible, right?
There are 4 of us in this particular trial. We are the second group. I had never met anyone else with my disease, so it was strangely special. We range in age from 23-77 years old, but share a few characteristics. One of which is that we are all very pale, (since we cannot be in the sun), and are very red on our hands and feet from inflamation and pain. See, I would like to describe us gals with skin likened to vanilla yogurt, but vanilla yogurt has a bit of color to it (and we are pasty white), so I opted for the Greek yogurt description- adding in some cherries on top to reflect the color of our appendages : ).
Also, we all need to be in cool temps at all times, like yogurt! Yes, we are a tasty group...
We are staying in a very nice research facility run by truly kind medical staff. When I was informed that I had been accepted into this trial, I was worried about the food situation. 2+ weeks of meals NOT prepared by myself (or my wonderful man) left me a bit stressed.
How on earth was I going to eat healthy?
Is green jello considered a fruit?
Does bad coffee help ween one off caffeine?
Is there a secret plan in this? Aack!
Thankfully, the facility directors live a very clean lifestyle. Phew!
We're talking organic roasted chicken (happy birds!), sprouted grain bread bursting with life (literally), loads of fresh produce, etc. They even make their own almond butter and freshly juiced yummy things. I am truly truly blessed.
My worries of being assaulted by deep fried unidentifiable protein and a side of tater tots were laid to rest. Yeehaw.
The only serious bummer is that I am the most extreme case that the drug company has seen, so I actually need to be in much cooler temps than the rest of the group. My room temperature is a a solid 60 at its warmest, so the other gals feel it's too cold for them; their room too warm for me. So I am alone most of the time in between tests and blood draws, and secretly jealous of the laughter and conversations I hear from the other room : (.
If I were antisocial, this would be great since I have an entire wing to myself: big tv, sofa, and a room with 4 beds. If I wasn't in pain, I'd probably fulfill my childhood fantasty of hopping from bed to bed with abandon. But hey, maybe this drug will work, will give me back some normalcy (aside from being a complete GOOFBALL, which no one can prescribe me a drug for, HA!!!), and then I can actually jump on those beds like a 5 year old, right?
Coming to Spark last year helped me realize the bridge between my pain and my emotional reaction to that pain. I had allowed my pain, stress, etc. to reign over my daily life, and wanted so much more. I truly have gotten so much from Spark, and my mindset has changed for the better. Hoorah!
Eating better and learning to work with what I've got has brought me to a much better place all around, even if it still is a daily struggle.
I might not be perfect, but parts of me are fantastic right?
God willing this drug trial is a success, and those other not so cute parts of me will 'cute up' a bit more.
But don't expect the goofball mindset to ever fade, it will only brighten.
Monkey slippers for all!
Friday, February 10, 2012
And once again I remind you to get your gray matter out of the gutter!
Guess what? I pay attention to the hands of strangers. If you and I crossed paths and I could get a good solid peek, I would probably be looking a your hands too.
The barista at the coffee joint (zoom zooming up my icy blended caffeinated stuff) has nice hands. I'm thinking that the black nail polish is some sort of a statement, but it doesn't distract me.
The wonderful check stand gal at my Trader Joe's and I often banter back and forth about the multitude of uses for freeze dried strawberries (AKA red fairy dust for my popcorn). She has no idea that while she swipes my diet Hansens pomegranate soda across the scanner, that I am admiring her efficient and pretty fingers, doing their task at hand (har har).
The ladies up the road who walk our beloved dog Olive both have tanned, tough hands. The type of hands that announce how much they love to be outdoors, and get their fingernails dirty in the garden. Hands with strength and purpose.
At my rheumatologist appointment today, the doctor was taking notes as I basically speed-talked myself to death, rattling off the ever growing checklist of prescriptions, pills, creams, and all non traditional methods I have tried to slow down my condition.
He had smooth, almond colored healthy hands, free of any blisters or wounds.
My hands were cute once. Currently, let's just say that they...aren't.
I was told when I was younger that I had piano hands more than once, and even that I should try out the violin. I guess that means that they we long and lanky? The Gwenneth Paltrow of fingers? These hands I drag around with me currently seem so foreign. I was not born with them, yet in some way, I guess I was?
Perhaps this is me of those instances where I want something that I cannot have (right now).
I know that we're not supposed to strive toward unrealistic goals. Perhaps I should heed the advice of another doctor I saw this week, who told me that it was critical for me to continue to work on altering my daily tasks to fit my worsening health.
Would that be like trashing your car because it was in a fender bender, and opting for the little moped scooter instead?
What if I want to keep the car?!?
I don't think that I deserve a time-out in the corner for wanting back what I DID have once, right? And your struggle to get back those things in your life (whether it be a goal weight, crossing the finish line of a race, even a new career!) are all justified.
I want my functioning (and cute) hands and feet back, thank you very much.
So don't mind me, staring at your hands. I guess I am a bit envious.
But don't worry, I'm not one of those people who think it perfectly acceptable to ask you to peel an orange while I video tape you.
Friday, February 03, 2012
Some people refer to their memory as a vault; capable of retaining important information for decades, ready to be neatly opened to reveal valuable information like some sort of certificate.
They can remember key points of a speech someone gave in the past, or what time that ridiculous train arrives into Boston if it left the New York train station 3 hours earlier at maximum speed (ugghhhhh, somebody kill me!).
I remember the odd, useless stuff. I can tell you what color of socks you were wearing when I ran into you on the street 3 years ago, and likely what color they were the time before that (yes, really). If I noticed you picking the olives out of your enchilada dinner and pushing them into a little pile on your plate (looking like a stack of Hot Wheels tires), then I will forever remember to keep olives far far away from you. I cannot seem to forget my Junior high locker combination from 20+ years ago (18-36-24), no matter how hard I want to let it go.
My memory seems more like an elevator, not a vault.
I would like to think that we all want to excel in life, or get to the next level. At least out of the lobby area, right?
Come take a ride with me...
'Second floor please'
I read articles and books about how to better myself a times. I often try to apply that to my life:
Being confident in my work skills, and how to effectively ask for a raise (I can impress you).
How to stay engaged in a conversation and keep eye contact with someone while speaking to them (I want to show you respect).
How to make a savory chicken soup by not only reading the recipe, but feeling talented enough to color outside of the recipe lines a bit (I want to nourish you).
But when it comes to my behavior when I am in pain, no matter how much I read, I don't retain enough of the necessary tools for that critical moment. When my bodily pain starts to creak and moan and squeeze out all positive feelings from mere moments earlier, I seem lost.
The elevator in my mind has then slammed the shiny steel doors and sent the car to 'P' (Parking level), and for the life of me, I cannot remember where I parked my memory!!!
And then there is my denial about it: "what the heck?! I pushed the 5th floor, NOT 'P'! Who's driving this thing anyway???"
We all start off at the Lobby Level in life, right? No one wants to go below that floor. There's NOTHING fun at the 'B' level (Basement), trust me. I'm well aware (after many years of stubbornness and denial), that I cannot expect to graduate to the higher levels of life (err, floors), by attempting to skip over important steps. Nope, not even if you pry open that emergency door hatch in the elevator car, trying to scramble out and up a few floors on your own (believe me, I have tried).
I can try to blame the switchboard all I want to, but it is not faulty wiring. The used piece of gum smooshed into the 'Open Door' button is not to blame. Do you want to know why? Because I keep pushing the 'B' (Basement) button with my eyes closed, SO SURE that I am pressing '2' the whole time, and expecting to move upward in my life.
Insanity is exhibiting the same behavior over and over again and expecting different results right? Ouch. So true...
I know what I need to do, and I am certain that you know what you need to do in life as well. The fine details are individual, sure, but the framework is the same:
Set some goals
Devise a solid plan
Get a support team lined up and USE it
Slap on some tunnel vision
Create a back up plan
Add some grace for the inevitable hiccups along the way
(perhaps a bumper sticker for some laughs).
I can't cry all of the time as a result of my pain, and I can't blame anyone for it (unless that elevator door has closed on my fingers, and then it is sooooooo your fault!! Yowsers!).
In all reality, my health will continue to get worse, and my well of tears will dry up at this pace (and snot is not cute).
I can however, acknowledge that my ailments are mean and nasty, but NOT react in a way that is mean and nasty to my body. I can stop pretending that I don't need to listen my pain when it calls on me to pull that red Emergency Stop button.
I am so thankful for those of you on this ride with me. I appreciate your advice, your virtual shoulder, and those thumps in the head when I need it.
Don't worry, I won't push the 'Close Door' button on you as you gallup toward the elevator car, headed to higher floors of satisfaction in health and in life. I need you there with me!
Besides, it's WAY more fun to jump in the air just before the elevator car comes to a stop with someone next to you, right?
Thursday, January 19, 2012
Am I alone in saying that popcorn not only makes me happy, but also makes me INSANE at times?
I try to reserve it for the weekend, since I tend to turn into a poppie freak, and need some ample recovery time to flood my body with water and lemon slices to leech out the sodium and what not that I assaulted it with the night prior.
That would be 94% fat free detoxing baby!
And if I am emotional, I get weak in the knees for those kernels, which let's face it, if you have read my blogs you KNOW that is often (I stockpile those kleenex cool touch tissues like gold lately. SO soft! SO cool! My nostrils are happy!)
Perhaps it's the way I prepare my poppies:
First you need to pour some popcorn in the bottom of the popcorn bowl.
Pay attention here:
Poppies, then a spoonful of crumbled goat cheese.
Next a dusting of freeze dried strawberries from Trader J's.
Then you keep layering see....
Poppies, crumbles, bright red fairy dust, etc.
Think like you're making a trifle... : )
Finally, a zazzle of kosher salt on top.
I'll usually grab a napkin the size of a table cloth (oh wait, is IS my tablecloth), and place that over my chest, since strawberry 'fairy dust' on the chest is not attractive.
I am then set for watching a great movie at home.
I didn't always like popcorn, so this obsession kind of surprises me (and my husband!).
Food intolerances decided to complicate my life along with my other ailments around the same time. One of my doctors tried to explain it as if all of my body systems were 'off', so that opened the door for other fun stuff to come on in and party hard on my organs. Comprende?
I was suddenly gluten free and lactose intolerant about 7 years ago (along with numerous other foods that I used to love). My point being, that until I had to cross over to the dark side of the gluten free / lactose free void that is now the menu for my life's meals, i ate grahams and cake, and real honest to goodness whole wheat bread. My mind was not consumed with what I could not enjoy anymore.
Insert lightbulb moment here (actually an energy saving LED bulb).
Maybe typing this blog for myself and the few Sparkly peeps who read this just helped me work through the source of this fiber filled obsession?
Am I decorating my gluten free popcorn like a 4 year old in one of those Toddlers and Tiara's shows to satiate my desire for the foods I miss?
I just might be.
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