Tuesday, June 25, 2013
"I'm Mikey and I'll be taking you to your room from the recovery area. Don't forget my name, ok?" he said with a smile as he wheeled my gurney to the C wing of Stanford Hospital.
The nurses hooked me up to various machines as Mikey started to wheel the gurney out of what was to be my room for a little bit. "What's my name?" He asked. "Mikey" I said. "Thanks for the lift" I smiled back.
I've just come home from a 10 day stay at the hospital. I accepted the challenge of another round of treatment, and it was a rough pill to swallow (darn you Neo. I should have taken the blue pill).
Within that time, I had 3 different neighbors in the private room next door to mine, but I remained. Part of me wondered if I could get my mail delivered there? Could I get a P.O. Box? I had been there too long, and all for not.
But I have to keep pushing forward with my health challenges, for my goals - ALL of them. Can't give up. Can't stay down. Can't let the enemy defeat me.
I need a cure...
I was told that like with chemotherapy treatment for cancer patients, you just don't know if it worked until its complete. Maybe next time?
I still feel completely wiped out, even two days home from the hospital. I have to remind myself that I had a picc line put into my left bicep to administer drugs. I had wires and tubes in my spinal space to pump in the treatment drugs, experienced the loss of use of my legs for a day (scary!), and a general lack of mobility entirely. My forehead literally glowed red from them taping the pulse oximeter to my head for days (which made it hard to turn my head). And to add insult to injury, I was just plain itchy 24/7 from the heart monitor leads stuck to my torso. I guess this explains the copious amounts of sleep I've been requiring since I got home. Snore snore...
I watched faaaaar too much of the (various) Housewives while there, but secretly loved every second of it. Some of the nurses I met (from two and even three trips ago) would linger a bit just to catch some of the botox gossip with me. Woohoo!
The nursing staff, room service staff and even housekeeping were all just so amazing. I'm truly blessed. And heck, some of them were giant goofballs like myself, which certainly made my stay more pleasant.
Yes, I brought a beanie hat shaped like a red velvet cupcake and my monkey head beanie (to cover my dirty hair. I had to add some humor to my days, right?)
Even the guy who came in daily at 5:00 AM for a blood draw was nice. Note: don't call that guy 'the blood fairy' like I did. Apparently he didn't like that. Well shoot, he WAS kinda like the tooth fairy, right? Better than calling him a vampire, no? Ha!
I logged onto Spark as often as my hands would permit, and smiled from ear to ear upon opening Spark goodies. All of you lifted me up and kept me strong! A HUGE thank you from me to you.
I had visits from friends throughout my stay, and the constant loving presence of my husband, who lifted my spirits often. He brought coconut milk for my coffee, and food from our home freezer (fresh berries!). He made calls to my doctors when necessary and earned a mighty sore back from trying to make the most of an uncomfortable chair, just to sit at my bedside. Yes, I am truly lucky.
One of my favorite nurses handed me my discharge paperwork when I was changing out of my attractive hospital gown . "Goodbye friend" she said. "We will miss you, but not enough for you to rush right back". I agree!
Summary of my recent treatment:
Suck-y part: telling my friends, family and even my bosses that this was an epic failure, and I am in just as much daily pain as when I left them for more treatment.
Sweet part: no surgical accessories shoved into my tooshy muscle. Had this treatment worked, I would have agreed to have my doctor implant a pump device to administer drugs 24/7. Lots of side effects, and lots of worry that I didn't necessarily want.
Well, I was too thrilled about going home to be sad with all of this. I'm sure there will be time for tears at some point.
One of the sweet housekeeping ladies came and asked if I was going home. I was happy to tell her yes. She disappeared for a minute and then came back with three long stemmed flowers for good luck, and then she blessed me.
As someone wheeled me into the elevator to meet my husband outside at his car, I saw Mikey wheeling another patient down the hallway. "Goodbye Mikey" I said aloud. He turned around fast. 'You remembered my name!' he said with a goofy smile. : )
So now I will do my best to heal up, gain some strength, and stick to the path before me. I'm excited to workout again, even if only for a little bit. I'm thrilled to be home.
It's too easy to cave in to throwing myself a pity party, overflowing with junk food and wine. I know that will only push me further from my goals. Gotta be strong and deal with my demons head on.
This was a failed treatment, but I am thankful for so many things that lead up to today. And I'm especially thankful for those blessings in my life that I'm not even aware of. Things could have gone worse.
Remember how I accidentally came home with spoons last time? I found a handful of salt and pepper packets in my purse organizer pocket. What the heck is wrong with me?!? Ha ha ha!
Tuesday, June 11, 2013
Paul Newman in Cool Hand Luke. Such a classic. Have you seen it? Well if you remember the scene where Luke (Paul Newman) is trying to break free from the chain-gang while on a bathroom break you might still have this silly line of his stuck in your noggin like I do. He kept yelling out, "shakin' the bush Boss! I'm shakin' the bush!" to let the warden know that he was going to the bathroom and all was well. Bathroom time is supposed to be private time, but heck, if you're on the chain-gang while incarcerated, I guess it's everybody's business.
I'll be having minor surgery tomorrow followed by a week's stay at the hospital to administer treatment drugs for my disease (my old pal Ethel). The tubing and wires shoved into my spinal space will affect my arms entirely, and I will not have use of them during those 7 days.
For lack of better words, I won't be 'shaking the bush' and takin care of my bathroom business - for a week. A WEEK?!? No brushing or flossing my teeth, combing my (dirty) hair, or changing my clothes. I am a woman, and us gals tend to want to take care of that stuff by ourselves, not with an audience, right?
I also know about 80% of the nursing staff by now, did I mention that? Why does this stress me out more with the looming bathroom issue? I know it shouldn't since it is all part of their job, but sheesh, is really DOES add a layer of angst. So I'm going to vent and share (probably too much), and get it all out here on Spark so that I don't bring any unnecessary baggage to the hospital tomorrow morning.
So often I make myself the strong one, marching in for procedures and surgeries with enthusiasm and laughter. Perhaps I do it because I hate being pitied. Perhaps I do it because I feel the need for my husband and friends to believe that I am strong and not to worry about me. I've done this so often in the past. But now I am realizing that this defense mechanism very possibly could have been setting me up for disaster. Maybe puffing myself up and pretending to be a big bad a$$ who fears nothing is all a lie, and lead me to emotionally eating those true feelings once I got home (often the same day). I see a link there now, where I was actually preventing myself from my own feelings. A nice 'aha' moment for me.
I'm officially allowing myself to feel scared and anxious but reminding myself that my thoughts do not define me. I do not have to act on my emotions. I can move on from them.
So, the countdown has begun until tomorrow morning. My bag is packed.
I've been doing the Whole 30 anti-inflammation type of eating plan for about 25 days now to shake my sugar cravings and try to get my body to heal itself (wouldn't that be neat-o?). I will do my best to adhere to eating clean and nutritious food while in 'the joint'. This will no doubt be difficult (I see A LOT of hard boiled eggs in my future). Ooh, momentary lapse into anxiety here as I wonder who will feed me? Oh good grief...
Hey, I can finally bring back those ridiculous spoons I came home with last time though. Ha!
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!)
Get An Email Alert Each Time JITZUROE Posts