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!
Sunday, April 01, 2012
Over the past 6 months, I have pretty much gained back almost all of the weight that I had lot this past year. Things have been...complicated to say the least.
I am now in the largest sized pair of jeans I have ever owned. It makes me mad. And here's the rub:
My jeans KNOW that I hate them. They do. It's wild.
My larger sized jeans gnash their copper riveted teeth at me in response to the constant stink eye that I fling in their direction. It's like my jeans have their own rap star-shiny brass grill (give me a beat!!!).
I don't see the purpose in posting the actual size of my jeans, since some Sparkers might be thrilled to be wearing my current size, and I do appreciate that. BUT that does not mean that I should be happy with it.
This was a giant step backward for me.
I feel as if I am stomping dust and schmear all over reaching my weight loss goal last year.
And these new jeans must be able to read me like a dog-eared book, since they laugh and cackle at me.
It's audible too. See, when I walk in my jeans, they give off an audible, 'scruff scruff' sound.
Within that sound, emanating from my nether region, they tell me that I am lumpy and undesirable.
They tell me that it's not worth the fight, so I should throw in that (workout) towel, and cave in to the inevitable.
And I paid for these larger jeans, which just gets under my skin.
It wasn't easy to bring home my attitude-filed denim. It took some work, like going to a flea market, except I didn't get excited in the end with my purchase.
My first thought was to hit the mall. I tried to keep the walking distance to a minimum though. My old jeans weren't even buttoned up all the way, and it was uncomfortable to say the least. Those poor jeans were so tortured, that they only emanated a wispy whimper sound with each leg swipe. My jeans were sad....
I kept telling myself, it's denim! It's cotton! It's the fabric of our lives, right??? So what's the big deal?
Macy's had no love for me. Not one pair fit right. Everything seemed to be meant for a person with the thighs of a 12 year old boy. When I did manage to find a size that fit, they were practically a foot shorter than I needed. This just wouldn't do. I knew better then to humiliate myself in the juniors section, so I went to Marshall's on the way home. I needed to get the most bang for my buck since I am not able to be on my feet for too long.
My old jeans forced themselves to move as I pushed my cart into the store.
Whimper whimper (the sound of my sad jeans).
My first stop - the candle section. Why? Because I was determined to come home with at least something that I actually liked. I found some gardenia scented candles, complete with fingernail marks and dust on top. I told myself that I could burn away that evidence right quick once I lit them, and chucked them in my cart.
I swerved back to the clothing section and dove in.
The Lee jeans were OK. Not flattering, but OK. The coloring was a bit off though. Plus they were still too short. I tried to talk myself into buying them if I promised to NEVER sit down while wearing them so as not to make it obvious. No dice.
I wandered to the Seven jeans rack. Sticker shock, even a Marshalls! I took one look at the price tag, gasped, grabbed my left boobie for some reason (what was that about???), and backed away from those jeans.
Then I saw some Lucky jeans, on clearance!
They did not leave that strange gap between the crest of my toosh and my lower back. This was a great thing since I was sure that i would need to stash my wallet or something back there to fill that void. They fit.
Now there are exactly two things that I can do in response to the situation that I am currently in (angry jeans and all).
Well ok, there are actually three things I could do, but one of them involves throwing my jeans into the trash and then being stuck without jeans to wear (again). Not smart.
I can either:
A) Let the scruffy talk coming from the denim of my jeans actually motivate me to get out of those trash talking beasts, get back to my Sparkly self, and get BACK to my smaller BACKside.
B) I can succumb to the rhythmic, mind altering scruffing, believe the nonsense and give up. This option inevitably ends up with my then buying even larger sized jeans in the future. Not a good option.
But hey, I'm cheap. I hate to blow $ on clothes I have no love for.
I am fully aware that if I am unhappy with myself, then I will unintentionally make my husband's Iife, and everyone else around me miserable. That's just not cool.
I'll light my fuzzy gardenia candles, meditate on this a bit, and go for option A.
Scruff scruff - for now.
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!
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