Friday, April 26, 2013
I was feeling REALLY messed up yesterday. A bad mixture/cocktail/pharmaceutical blend if you will. One of those drugs sent me into a series of weird moments with my cool pain doctor saying 'Bren! Bren! Can you open your eyes for a minute?!' commands.
I was in a weird coma-bored-to-tears-ish- 'I can hear you but I cannot reply' chapter of my stay. And I was stuck in it from 8:00 pm on Tuesday through yesterday (Thursday) around 2:00 pm.
I was sleeping but not sleeping. It was weird and NOT fun. My asking for help in between digging through the mental cotton candy fog was scary.
And in the end, boom: "the surgery site seems to have gotten infected and we have to stop treatment and send you home until it heals". What?!
"Then we should bring you in and start again". Huh?!
Ahem, sorry. So we quietly went home with loads of ice packs and some soft tears.
I feel fragile and messed with.
My main pain doctor (we will call him Old Guy) was warned by the younger pain doctor (Senior Cool) for almost two days that the surgery site looked infected and irritated. 'No no, lets keep up with the desensitization exercises and see if we can't make some progress before performing a new surgery'. Senior Cool would clench his teeth and look at us with sad eyes.
He was mad.
We were mad.
I was wrung out.
There was nothing he could do w/out Old Guy's go-ahead. I get it. The hierarchy sucked on my side. But we couldn't make Old Guy do anything, right? What a bummer that my main pain doctor lady was on a much needed weekend trip with her daughter. She would not have let this happen. No way.
Now I feel like I have to heal up to be beaten down again. the doctors will have a collective pow wow and decide when to bring me in next for treatment. I am hopeful that will be when I am not already in a nerve flare. Things are really tough then on all of us. My veins don't cooperate with the IV's, the sheets hurt, the lights hurt, the food...well, you already know that hospital food kinds 'hurts' (ick).
So unfortunately I am home and feeling a bit worse for wear from when I came in. But I am still happy to be home. I am snarkier though, so look out! : )
But I feel like a bit of a disease-riddled criminal! I was unpacking my little hospital caddy and noticed that I had brought home 2 metal spoons. Eeks!
See, sometimes the cafeteria person would deliver my jello and forget the spoon (or even worse, it would be a dirty spoon!!!), so I had a couple of spoons on hand just in case, right? Well. I guess I brought them home accidentally. I feel awful! Am I headed to spoon jail? Hee Hee.
I look like I got in a knife fight though from the bandage on the front of my neck with the massive jugular IV welts, and the back of my neck with the infected oozy epidural catheter. Yummy.
And heck, i got the back of my neck waxed for free, FOUR times in 24 hours! Woohoo!
The reasoning behind the catheter was to numb my arms entirely. Then the phys therapy doc would come and tell me to put my hands in dry rice and beans to get my hands to mellow out. I would squeeze play dough and pick up beads and rocks. Seems simple, but I needed to learn to do it when it didn't hurt (while numb) so I could tell myself that I could do it later, with the daily constant pain.
But since only my left hand was getting coverage from the drugs and my muuuuch worse right hand was getting nothing, it stunk!
Therapy on one hand while the right hand festered with swelling and lesions was a bear. Almost an insult to my right hand. My leftie was saying, 'ha ha, look what I can do!' The drugs would also ultimately treat the pain flare, even if only for the time I was in the hospital. It could have potentially kicked down the wall of flare for a few days or a week. So I went for it. The things you do you when desperate I guess?
Anyway, I wanted to thank you all for the support and for the laughs while I was in the joint. I love you and lean on you all so much at times. And you let me. Thank you!!!
Now what do I do about those spoons? Mail them? : )
Thursday, April 11, 2013
*Warning* Venting and food porn! But also in dire need of encouragement.
I brought the medical bills to work since its easier to call and figure out the current $ due with a live person on the line, right? The amount due was much higher than in the past, or even 6 months ago. Wow our insurance has really pooped out since January of this year. First is was the prescriptions of mine that they simply no longer covered (ok, we will deal with that). But now I need to pay over $600.00 for some minor pain treatment in February.
This doesn't even capture the $ due for the past two surgeries (at the end of February and then 2 weeks ago). And we just paid (err, charged) a tremendous amount of $ for installing air conditioning last week (which is STILL leaking and will be fixed soon, but stilllllll!), and I am (still) in yucky pain.
Does this mean that I am paying a lot of money out of pocket to NOT feel any better and NOT be in a chilly-cool living room at home? Uh huh.
Ack! And we have to still do our own taxes. Blerrrrrg!!! We owe too. Gosh, will we ever NOT owe? Bro-ther!
So I want salt and fat and gooey things laced with butter. I want those burned edge bits of the brownie pan AND the gooey pudding-like center of the brownie pan too. Gotta be honest.
And I need to be even more honest and say that while I plan to make it through tonight by eating healthfully (darn it!), I already hear my inner brat whispering in my ear. She is telling me that if I survive tonight, I can certainly 'feel' this cruddy stress all over again tomorrow, and emo eat then in vain attempts to stuff it down, literally and figuratively.
Yeah, it's there, in my noggin.
But I don't want to.
Even though mentally I am looking down that road of marshmallow creme and cookie dough dreams, my feet are pointed in the opposite direction; on that road back to healthier choices; ESPECIALLY when stressed out and feeling anxiety of what my illness is costing us financially. Because that is the path and road I WANT to follow. I need to help myself in the areas that I do have control over since my disease is out of my control. Good choices with food, more times than not. Much more rest to counteract the zzz's that my EM robs me of, etc.
I keep telling my inner brat that 'my thoughts do not define me'. They don't, right? At least they shouldn't. I don't HAVE to allow them to do so.I don't HAVE to be defeated, right?
Do any of you experience that moment of standing at the crossroads - Where your triggers try to dictate who you are? I'm there. It's not where I want to be. But even as my feet are pointed in the direction to which I want to go, I have not started walking forward yet. Come one feet! Move it!
Wednesday, April 10, 2013
Benefits of cold weather (from someone who must be in cold temps at all times!)
Doctors claim that cold weather boosts your metabolism in your body's effort to stay warm, so people tend to lose more weight in cold weather. Hmmmm? I Like it!
Pesky insects don't survive in freezing weather. No Mosquitos, Fleas, etc! Which also means none of the horrible diseases that these insects carry either.
All the dog poo in the back yard freezes, making it easier to scoop. If you step in it, it does not matter, IT'S FROZEN & will not stick to your shoes.
(My most favorite): Cold Weather Can Reduce Inflammation - There's a reason putting ice on an injury works. That drop in temperature reduces inflammation. But the theory works on a much grander scale, too -- cold temperatures can reduce inflammation and pain all over. In fact, athletes and spa-goers even have a remedy of sorts available for muscle recovery. A 2011 study found that, at extremely low temperatures, such treatments, called cryotherapy, did more for athletes to recover from physical activity than simply resting. At some spas, cryotherapy chambers appear much like steam rooms - with, of course, the opposite effect. And while the majority of us probably won't be taking a trip to the cold room, it certainly beats summer swelling!
In some countries, the use of cold temperatures for medical purposes is taken quite seriously. Several years ago, Finnish researchers reported the results of a study of 10 women who, for three months, took cold-water plunges (20 seconds in water just above freezing) and submitted to whole-body cryotherapy sessions. Blood tests showed a two- to threefold jump in norepinephrine levels minutes after cold exposure. Norepinephrine is a chemical in the nervous system that wears many hats, including a possible role in pain suppression.
Endurance Performance Increases in Cold Weather:
More Fat is Burned During Cold Weather Exercise: Exercising in cold conditions can produce both higher usage of muscle glycogen and also higher rates of fat metabolism…Insulin levels have been shown in some studies to be lower in winter and cold conditions which can also spur on fat breakdown.
Cold Water Bolsters Immune System: Scientists from the Czech Republic immersed subjects in cold water for one hour, three times a week and monitored their physiology. They found significant increases in white blood cell counts and several other factors relating to the immune system. This was attributed to the cold water being a mild stressor which activates the immune system and gives it some practice.
Athletes who train regularly in cooler air (or in cold water) are less likely to experience downturns in their immune systems after workouts than those who are exposed to the cold only sporadically.
The Cold Will Make You Happier: cold will also stimulate your parasympathetic system, which is responsible for rest and repair, and this can trigger the release of dopamine and serotonin. These neurotransmitters are a vital part of keeping us happy and low levels of them are linked with depression. Couple this effect with the endorphin rush as you take the plunge and it should make for a warm glow and a wide smile when you re-emerge.
Speaking for myself and my disease, cold temps keep a bit of a muzzle on some of my chronic pain. Warmth of any kind triggers pain flares and wild swelling. Since people with EM cannot sweat from the affected areas (arms, legs, face), it's a whole lotta no fun. Cold temps and ice packs sit on some of that pain, at least for a little while each day. I love me some cold! And I have a new appreciation for it after doing this Spark Team homework : ))
Yay for staying chilly (at least for myself!)
Tuesday, April 02, 2013
Were you assaulted by marshmallow peeps or that danged Cadbury Egg?
I'm pretty sure I consumed both. Blech.
I won't say I blew it this holiday weekend, but I certainly didn't fare well.
I DID have an 'aha' moment last night though, and I am kinda impressed with myself.
Is it possible to be disappointed by my appearance and my eating issues and still give myself some kudo's? Important to note that these are not the real candy bar Kudo's of the grocery type, but a much needed pat on my (already) padded back? : )
I feel like a screenwriter here, but here goes:
Monday eve. Nervous and anxious about potential nerve damage in my left leg as a result of the procedure last week to hopefully relieve some pain. I just might be one of the casualties that the docs warn you about before they knock you out. I'm so upset!! EAT!
Will it last forever?! Numb from the knee down, but still have so much pain there? Is that even possible?? Eat. Eat.
Is this how I will need to live out my life ON TOP Of living with Ethel (my EM) and CRPS? - With crutches and being unsure of walking on my own -FOREVER?! I can't breathe...
WAIT A SECOND.
Is living out my life with potential nerve damage going to get any easier with eating my emotions and getting even bigger???
*Stop eating* (Woah!!!).
I waddled to the kitchen and put back the remaining sweets (holy moly), and even tossed the extra popcorn (wasting food? The horror!)
Do I get an award for this? Will I one day write and bellow out some sappy acceptance speech (and forget to thank the people I love accidentally)? Hee Hee. I dunno.
But strangely, aside from the total discomfort of eating too much prior to that moment, I felt... motivation? Like a slice of my former self hollered out, "hey you, chubby. Yeah, I'm talking to you. You have always hated the idea of throwing in the towel. You've not only thrown in the towel, but i think you're eating it. KNOCK IT OFF!!!"
A tiny particle of the old healthy me didn't retreat with this inner confrontation, but acknowledged it instead. No excuses this time. No denial. I don't know how that 'aha' moment could have motivated me, but it did.
So this morning I did as much of my dvd mat workout as I could handle. Even though I had to hold ice packs (acid fire arm pain); even though I couldn't wear my shoes (yep, more fire pain); even though my workout pants wanted to roll off of my belly like some twisted circus trick (stay up darn you!).
Instead of focusing on the sad scene of me fighting with my pants throughout that partial workout, I have been looking online for some of my favorite Lucy capri workout pants. My bum is bigger. I get it. But (har har) to keep me inspired to shrink it smaller, I want to get some workout clothes that fit!
Look out world, here I come.
Wednesday, September 26, 2012
I have used this phrase in reference to my hands and feet often, but this time I am referring to my nails.
They seem to be leaving the building. As in, 'Elvis has left the building'.
I've noticed that I dwell on this recent occurrence more than I should.
By then again, how can I avoid it? My hands are right there in front of me. I generally cover my legs with a pair of black tights and a skirt, so that doesn't nag me too often. But my nail-less fingers...it gets under my skin.
I needed some distraction from my nails, or lack there of.
Rather than focus on all of the things I have not been able to do for quite a while with the frail and now some missing nails (like opening soda cans, picking up a penny from the floor, actually pushing those 'push' buttons, etc. why not think up some fun benefits that warped and/or nail-less fingers CAN do?
Yes, many of my nails have 'left the building', but it was time to put a twist on this reality. It was time to get my giggle on. Check out what I came up with, Elvis style.
I visualized myself in metallic gold shades, flaunting a frothy pair of unaffiliated side burns.
Then I surfed my own personal wave of a Blue Hawaii daydream, as if channeling The King:
I could stir the peanut butter in the jar with my index finger, not having to worry about getting it stuck under my finger nail before making that fried PB and 'nanner sandwich.
Don't worry! I haven't actually done this. I'm just dreaming about it.
Mmmmmmm....drool drool drool.
I could play a guitar with a guitar pick, and not worry about using nails here either. I just might belt out, "All Shook Up" though. So be warned, I can't carry a tune!
I would have no problems hopping into and out of those polyester sequined jumpsuits since there are no buttons. Yay for giant zippers!
I took the shiny gold shades off and came back to reality. I seems that Elvis Presley is a good fit when I need a good distraction.
Bonus of Elvis daydreams: the rhinestone clad wardrobe distracts anyone (even myself) from seeing those mangled fingertips. Nice!
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