…I’m still having symptoms.
At 6 weeks? Not normal.
My Cardiologist says it’s the detox.
My Pain Management Doc says it’s my heart.
She wins: Solution.
This means more red tape.
…NOW, I have to go another round with that Halter Monitor – the one I wore last year for 2 solid months. Electrodes, leads, a small boxy looking device and yes – a cell phone I must keep on me at all times, bringing the total cell phones I pack up to three…
And yes, tape. Not just the red kind.
(Leads don’t always stick when you need them to, where you need them to.)
This brings up anxiety. Which causes my heart palpitations to worsen. Which creates a vicious cycle of me, me and more, well, me. You see, a year after wearing that frackin’ monitor for two months, I’m still fighting the provider of the monitor over a bill for $2,855.00.
They say I have to pay it because my insurance won’t. The MD forgot to get a prior approval, despite my having waited in his office for two solid hours while his admin “took care of it.”
She still swears she did.
That went well.
I just got a bill for a wheelchair I’ve had since 2006. My insurance company BOUGHT IT FOR ME outright – it was cheaper than renting. But since they’re no longer my insurance company, they refuse to send me proof of purchase.
And those are just 2 out of 7 medical bills I’m fighting – to the tune of …$18,000.
Then there are the little things. The ones that – alone – don’t amount to much. Or maybe wouldn’t to most people. To me, some of the little things are the ones that are the most telling of all.
I have greasy hair even though I washed it 2 nites ago. I think I used too much body lotion and probably touched my hair afterwards. Usually, with it this short, I can go two days without – not without a shower, mind you … but without having to hide my ‘do under a cap. (Which, btw, I can’t even wear right now, because my frackin’ head is so sore still. That darn surgery – such an inconvenience.)
I am so dehydrated I’ve had 4 vats of water & can’t leave the house because I’m peeing every 20 minutes.
I woke up 7x last night.
My cluster headache is at a level 9.
– Out of 10.
…_ __’s talking about divorcing _ _ _.
(for the 32nd time this year.)
I haven’t been laid in… um… (that was supposed to be a bubble thought.)
My pain is so severe, I’m bed bound.
So bad, I haven’t been able to pick up the phone, check messages, pay bills, look at an email, open mail, brush my hair or my teeth.
I believe little tiny Gnomes visited me last night and knitted teeeny, tiny little sweaters for them. My teeth, I mean. And yes, this grosses me out. (Do you think I’m cataloguing this sh*t for fun?)
I’ve got no energy to get out of bed long enough to make it. (This, BTW, will be the cue that might set off alarms amongst those who know me best. I am a freak about having the bed made.)
I’m wearing the same clothes as yesterday. Black yoga pants. Faded. Gray wife beater. Shrunken. Black velour hoodie. Short. …At least my socks are new. (Thanks, Mom…)
Managing clean panties will be a coup.
Benny got bitten by Red Ants and is hopping around like a Tripod.
My storage unit almost went into AUCTION – and I nearly lost my stuff.
It’s a miracle I happened to open the letter in time.
Why Close The Unit?
…BC I paid! Just last month! Two months ahead.
But somehow I neglected to include an old $30 late fee.
That was a real productive way to handle the issue.
…I’ve lost nearly 15 pounds.
Which should be a good thing.
And which puts me into a loose pair of size … coughing-into-my-hand.
But it’s hard to be excited about a size (coughing-into-my-hand) when my lifelong default has been so different. I mean, the largest size Iever got up to was when I was shopping at the GAP.
-I have chin hairs. When the hell?
OMG – upon closer inspection, it is apparent they are real. And … in THREE DIFFERENT COLORS. Sheeyat: I thought that multi-colored hair was for the HEAD. Some of you will remember – I usta rock the tri-colored hair before everyone else started pimpin my style. Lol
…I have a new blog I can’t finish. Which is not so new considering I wrote it last Sunday night after having had a fabulous day for a change.
I miss my East Coast friends.
A Jehovah’s Witness has now come to the house on five separate occasions…
And I think of it as social time.
I have over 100 Thank You Notes to write to Donors, Family, Friends who have helped me in the past three years: I even have people willing to help me get the notes done …but I’m stuck in BUTs.
I owe a Blog regarding “What I Treasure” to a charity I’m working with and am behind on prepping that. And this is with help.
Our 2 Benefit Concerts here in LA -for National Stroke Awareness Month -are in danger of imploding.
Our contact who was going to help secure the VENUE apparently got a “no” from the primo place we wanted to use. New management. We’re months behind on this project. The bands are getting restless and rightly so!
I’ve played so many places here in LA – we should be so far past the point of locating a place. But here we are; I’m scared. The bands are having to go ahead and book their calender for the next 8 weeks.
Meaning they may, sooner than later, have to forgo their participation in the Events. Unless we can give them concrete dates and NOW.
Add to that the fact that we need to promote the shows, get sponsors, get press….
Then, there’s the task of maximizing the event from a money making perspective.
There, you see, I have to order Merchandise- wristbands, tees, tanks…stickers…
(and copyright – no – frack. TRADEMARK the designs beforehand: legal advice would be appreciated. Seriously.)
All of this, life stuff, me stuff, all of it – it requires capital.
These are all forms of capital, I suppose.
I have a solution!!
I’m outta energy?
…..MAYBE I NEED TO TAKE SOME “PROVIGIL”!!!!!
Some Fake Energy.
(It always seems to come full circle…)
In this case, I’m over the idea of even lambasting Uppers. No, I’m onto obsessing on … Oxygen.
From energy to pain control.
Oxygen, you see, apparently, can be areal positive option for treatment of Cluster Headaches:
this is a good thing. If it works.
The goal -for me – is to see if it will help alleviate the mind-bending pain of the headaches. Without having to take more pills. Some of which (pills) are -in large part-responsible for the Detox I mentioned in the beginning.
Here’s a mind fu*k for you:
It’s harder to get -from the prescription itself, i.e., how to administer the oxygen, to the insurance authorizing the oxygen -much less – paying for it – than it is to get them to agree to dispense hardcore drugs. Hardcore. Legal.Drugs.
I mean, really.
…Why go NATURAL when you (you being the MD and medical institution…) can be wined and dined by DRUG COMPANY REPS?
Yes. Better to load your patients up on good old class 4 Narcotics, drugs stronger than Heroin.
…It’s so much more convenient than doing all the paperwork to get the authorizations for safe(r) alternatives.
God forbid we actually try for some balance, a holistic approach, much less some good old-fashioned common sense, long-term thinking, prevention, or -GASP!!!! – an approach that merges East-West medicine.
So you see, because 02 requires so much WORK … it’s taken me 3 months of nagging my GP to get a concrete response.
Taken countless calls to the insurance company. Calls to locate a distributor of O2. Um … Oh! And that costly little trip to Stanford to get the Specialist to write specific instructions to my GP. (Among other things – this wasn’t the only reason I went, as you know…)
I finally get the RX for oxygen.
Unfortunately, my PRIMARY care Doctor, my GP, fudged the paperwork.
Because of the Holiday (Happy Holidaze,everyone), she can’t fix it till Tuesday.
There goes insurance paying for that right now!!!!
So. Cash Pay. Yup.
…I just paid a delivery guy …$80 to get, and to show me how, to use the oxygen system.
I tried it. Conveniently, I had a headache.The worst headache I have had in months. So, I guess I got my hopes up. According to all the data, there was a good chance I would feel relief.
And maybe some …EUPHORIA.
(That sounded good.)
In the end, I wound up sort of seeing myself from outside myself – I swear, it wasn’t the Oxygen – and thinking:
“I’m an octogenarian.”
Yep. Me, with my cane on the one side and this frackin’ PORTABLE Oxygen tank, on wheels, to the other.
Me, in my worn-out work out gear, and my worn-out self.
Me, sitting there with a mask on my face, which fogged up my glasses whenever I exhaled, (and reminded me that Lord GOD, I needed to take care of those tiny little sweaters on the teeth–eeewwwwww!!!!!).
After this, after taking the treatment for the prescribed period of time?
Um… Ithink I got about 10 minutes of a dulled (yet still agonizing) pain. Meaning this was better than normal.
Then the pain?
It got BAD.
I guess that – much like a migraine sufferer needs to take a Triptan at the very onset of the attack, so too do I have to catch the pain before it consumes me. Meaning I have to hit the tank stat.
So. Here we are: the pain is too much. It’s now been hours and hours and hours and I’ve rocked, cried, laughed, tried to cope, talked it out, wailed, hyperventilated, done deep breathing, meditated, done some Jin Shin, tuned out, watched my new Fave TV show (BattleStar Galactia–hence the use of the word “Frack” at every opportunity…).
But in the end? It is just pain.
Pain so excruciating, I now get why Doctors have dubbed Cluster Headaches “Suicide Headaches.”
No, friends, it’s not JUST MOYAMOYA! It’s another frackin’ issue. I’m a basket case. I’m a veritable nut job. I have so many diagnoses, I think I deserve to put “D” on the end of my name. Like a title. In honor of all the “DD’s” I’ve been diagnosed with over the years. ADHD. PMDD. EDD. JK. IEED. MMD. Cluster …. heaDaches.
Goodtimes. Yup… Yup.
So. I guess for the time being, I have to hit the pills instead of the mask. Or both, as the case may be.
You see, I am supposed to keep trying it -the oxygen-because
it just might be that I didn’t catch the headache in time, or had bad timing, or not enuf 02 or note nuf 02 for long enuf….
So I will. Try again.
Did I mention that the taste of the 02 mask sucks??? It tastes VILE. Ugly. Sterile and yet … dirty. Plastic.
It’s like having a hospital inside your mouth. …And we all know how very much I love hospitals.
But Other Than That…