Crashed and Burned

 

Crashed and Burned

~~August 17, 2011~~~~

I saw my pain doc yesterday, and like I said, and though I did not bring Bean (the black/white kitty), as I sometimes do, my sleep factor was a big fat ZERO the night before, and though I was able to sort my articles on ME to have ready for him--the short ones, and only like one or two.

Guess those docs ya gotta keep it simple...How many years of training and they can't sit down and read an article written by a friggin collegue???? Call me the freaking idiot here, or is it just what I am wondering???

But anyhow, many ask what is ME (myalgic encaphalomyelitis)?????? But the ones that do, try to send me off to CBT!!!!

Now, the idea that CBT helps CFS is built on the premise that I am an overtired woman who doesn't know how to manage her emotions, and is suffering from the CFS because I am, essentially, driving myself crazy: and that is what is making me so darned tired.

Cognitive-Behavioral Therapy (CBT) is an empirically supported treatment that focuses on patterns of thinking that are maladaptive and the beliefs that underlie such thinking. In addition, depressed patients learn how to restructure negative thought patterns in order to interpret their environment in a less biased way. Simplistically put, CBT is learning how to change how we think about things, then process them, and in such, it will change how we feell--eg, we become less depressed/moody, etc, and I have seen a large number of people respond to CBT, myself among them, and actually when I recently was looking for a therapist, I searched--asking each one, "Do you do short-term, goal-oriented, focused therapy, subscribing to the CBT model of therapy?"

In most cases, I got a reply that they either subscribed to a group-oriented approach (I disagree with for what I think are obvious reasons (oh, say if they've been traumatized???), subscribing to the DBT model, which I do not agree with for reasons I don't wish to go into right now.

But suffice to say, I've never at any point been against CBT. BUT how in God's name is that going to solve what is being proven more and more as being a problem of left-sided diastolic heart failure. To get to an understanding of what this means (other than I could mainline caffeine and it wouldn't help!) is that SYSTOLIC is when the heart contracts and is pushing blood out, so the ventricles are empty, and DIASTOLIC is when the ventricles relax and are filling.

ME is a disorder of diastolic heart failure, and you are going to meet certain criteria, but at any rate, if your ventricles can't fill with enough blood to pump out to the vital organs, which include the brain.

So, they are initially going to look for the "PENE" criteria....
P ost
E xertional
N euroimmune
E xhaustion

Severity:

Mild: Approximately 50% reduction in pre-illness function

Moderate: Mostly housebound

Severe: Mostly bedbound

Very Severe: Bed-bound and dependent on help for physical functions.

Now, I reasoned to my doctor, if I am having a problem of diastolic heart function, then what the heck is CBT going to do in order to improve that, and being in all favor of that form of therapy, why is my exhaustion , or ME, being told to go to psychotherapy when it's a PHYSIOLOGICAL PROBLEM.

She told me that "most current information she had on CFS..." was that the treatment of choice was CBT. I asked her, as politely and patiently as possible, how in the heck is CBT going to prevent me from "Crashing and burning?"

Naturally, she asked what I meant.

I told her that today was Friday, right? She said, "Yes, thank God."

I gave her that one. I said that the previous THURSDAY, a friend had come over to take me to Winco and help me out with my grocery shopping. I need help because I cannot be counted upon to remember what to get, to make the most of the money I have, and I also just plain need the dang physical assistance in carrying the groceries to the car, and reaching stuff, and making sure I don't stand up too fast and pass out; and in lifting things; heck, I have days where a large can of soup is a lot!!!

We started with a hearty lunch at, well hell if I can remember, but somewhere nice, and it was expensive, but heavenly and lots of leftovers! That, I said, I think had taken all of 45 minutes.

We'll give it 60. Just for kicks and giggles.

Winco--that was 2-3 hours; so we'll say that was 3 hours.

Total thus far = 4 hours. Now, I used the handicapped spaces, and an electric cart at the store. And had a hearty meal...and had my waterbottle with me.

And I am in a body where the heart doesn't pump enough blood to the most vital organ of all:

The brain!

So, here's my body, and my oxygen-starved brain, as my heart isn't, as hard as it may try, going to tolerate this kind of trip (yes, I had shortened this up--I'd left off at the trip to Winco: the rest of this is discussion)

Ok, doctor back in the room.

I said, that after maybe 3 hours of shopping, and lunch first, we went next door to Costco, and we were to get a chicken, and then the usual: cat litter, aspirin, so on, and the most fun:

Browsing for stuff we can't afford!!!!!!! Yeah, baby!!!!!

But, I am standing in front of the chicken area, and all of a sudden-WHAMO!!!!!!

Ok, none of us are total morons--we all know pain was in the deal already, and I had zero, nada, nicht, in the way of any sort of pain meds. I actually DID pop open the aspirin and swallowed FOUR of them....DRY.

I watch my doctor cringe and waited for: The "do you know what that does to your liver/kidney, friggin' heck, your nasal cavity, speech?" It did not come!! Wow, what's up here?

But seriously, the pain hit--HARD...bowling ball, knocked over all 10 pins hard, grand-slam home-run, hard. My leg was starting to turn 10 shades of blue/purple when I looked under my sweatpants...it was gonna be uuuugggggllllyyyy!!!!

Then dizzy, lightheaded, and everything had a purple outline, and I was feeling short of breath--few (not sure how many really) hits on the Ventolin, which THANK GOD I had in my pocket, shockingly enough...

But when I felt like my heart was beating too fast, and like the "Hey, lady--hahahaha, ya overdid it, so I am gonna explodoe now, and REALLY F*** up your life!!!!" I'm sure I was not looking good at this point, and I was literally pouring with so much sweat, I could SMELL it, and oh, nasty, but I was so damned exhausted I didn't care.

I felt like I was going implode and explode all at the same time, but I just was not sure if it would happen before or after my organs, one at a time just, well, came apart. My brain was feeling fuzzy--probably screaming for ozygen by then: would have been wise to bring it along, you think? Was I thinking? No.

All I could think: GET OUT!!!!! I had to get out, and I had to sit down...I fumbled for my cell phone, and my hands shaking, PRAYED she would answer, Please pick up, but the words would not come out...my leg was on fire...my body coming apart like jello....please pick up....I dialed her number, my best friend locally, Kelly, and at that time, I did not know her name...please pick up....dialed the numbers individually, my hands shaking so bad...pick up dammit...pick up dammit.

S***!!! I was greeted by her voicemail, but suddenly remembered our code if there was an emergency to cal the other, it was to first page, and then text, simply "911." Three simple numbers, and I was suddenly shocked, proud, and amazed I remembered! I shakingly dialed in the 9-1--1 and then # to send it through her voicemail. Then, hanging up, I went into my text messaging section, and texted her, "9-1-1--NOW" to add the emphasis, so she would know...I was starting to forget where I was, Jesus!

My phone rang. Rescue. Six simple words: "Get me...out of...here...NOW!!!" She heard the collapse in my voice...dammit, I could not figure how to hook up with her--where to meet when I didn't know where I was...

"Look to your left--that's the arm you broke last year, you can't bend the pinky well..." she threw in the clue. I looked over and saw camping gear. "Camping gear. I was determined to not end up on the floor. Then someone would be calling the REAL 911, and oh, not a chance--the last place ANY person suffering RSD wants to end up is the ER.

She found me, and we left the baskets, and got me home...some kids--adolescents, were playing out front. She got me into my apartment, paid the kids to carry the food upstairs.

She got me into the bathroom, and eventually finally--into bed. I use oxygen periodically at night, and she put my oxygen on me, put my medi-sets next to the bed, and programmed my phone to sound off obnoxiously and wake me to take the orals...and the next day, and had me set for the next couple days....

See, doctor, this happens all the time.

"How long did you sleep?" she asked.

"Which day? I asked her

"Any of them?"

"On the average," I told her, "Day one, which would be Thursday, eighteen hours--straight. Day two, seventeen hours, Through the weekend, a 48-hour weekend, I woke up long enough to take my meds, change my patches, and that's it....Period. Slept the rest of it. Monday and Tuesday, I slept 20 hours/day..............after that, I couldn't sleep Wednesday and Thursday."

She looked shocked.

"So when I have a collapse like that.....tell me something: how in God's name is CBT going to HELP? Make me convinve myself that my brain got enough oxgen for that four straight hours? No disrespect to the info you have, but the info I have came out the day after my collapse. What about the info you found?"

Then I said, "The other problem is when I have a collapse, wanna know what happens? I get behind on my pain meds! Then what? I get into a pain crisis!! Is CBT going to help that? If so, how?"

How?