You've GOT to be kidding me !!!??!

Warning:  Migraine Rant!!

I swear (and trust me-I've been swearing all day)!  First, I couldn't sleep last night, because when my migraines hit sometimes I can't sleep.  Lying still is what most people do when they have a migraine, but me, of course not.  Did you expect me to be normal?  You should know better by now.  I'm UNIQUE :)  Somehow that word is quickly becoming the equivalent of screeching nails on a chalk board.  For some strange reason, I have a hard time lying down during my migraines.  I sit up and, like a crazy person, rock back and forth a bit (during SUPER bad ones).  I know, scary huh?  Most of the time I sit and push my thumbs into my eye socket and hope that somehow I can pop that sucker back into my head.  It feels like my eyes are going to burst.  Seems reasonable to me that pushing them back in is the rational thing to do.  It's not???  Of course it is.  Okay, maybe I really am weird (I refuse to say unique).  At one point in my life I embraced my uniqueness and was proud to be my own person.  PLEASE, GOD.....I just want to be NORMAL.  Slightly out of kilter?  A tad bit on the weird side?  A few fries short of a happy meal?  Please, anything but UNIQUE!  

Seriously though, I spent my night in agonizing pain.  I just kept knitting headbands trying to ignore all those evil nerve sensors, on overdrive, screaming for my attention.  But I refuse to listen to them.  They have to shut up sooner or later.  I've taken all of my abortive medications.  Nothing left.  I knit through the wee hours, with my poor dog wondering is it day or night?  He's confused because he wants to sleep, but I can't.  He gets a little moody about disturbing his slumber.  Well, now as the day dawns and my vision is so blurry that it looks like my house is full of a cool, winter morning  haze after a big downfall of snow.  Alas, no snow.  It's only September.  I did discover the Lime & Violet podcast about knitting.  Always wondered about people's fascinations with podcasting.  Lime & Violet are rather kooky, and a bit irreverent while talking all about their lives and knitting.  I felt like a lone person sitting on a park bench, overhearing best friends catch up on all the latest gossip.  This new adventure kept me distracted until my much healthier half got up.  This is where my patience runs out on me every time.  I've suffered through the night, managed to keep my butt (actually head) out of the Emergency Room, and now the long wait from 7:30 when hubby leaves until 9:00 when my neurologist opens for the day.  I get the nurse on the phone, who knows me quite well, and we discuss how I'm not fabulous today and I have officially given up on curing myself.  She types notes to send to my doctor and then asks me, "what would you like today?"  I always rely on my trusty Stadol shot, which rarely fails (note the very important RARELY) "I don't know.  He knows I'm out of my Stadol nasal spray 2 weeks early,  I'm betting he's just going to shoot me at this point!"  She actually added that to the end of her note to my doctor.  Luckily, he decided to send me to the hospital to get a shot with a needle and not a gun.  Not sure that a gun wouldn't have been a better option.  WHEN are they going to start doing head transplants?  I would like to have a nice, new head with the same freckles and formerly natural red hair, just leave off the extra two chins.  Yep, sounds good to me.  

So, off to the hospital we go.  My poor hubby takes another long lunch to trudge with me up to the hospital and how he manages to not go crazy I will never know.  The one good thing is the hospital no longer sends me to One Day Surgery to get my shot.  It took at least 1- 1 1/2 hours to go through Admissions (gee, they are always so eager to work fast)  I think they should put me into the system permanently 'cause, heck, they already know who I am when I arrive.  Sad isn't it.  Now I go to the Cancer Treatment Center to get my shots.  I only had to go through the registration once (which was last Thursday, ugh) and from now on I just check in and head straight back to the infusion room.  It's bright, but not noisy.  You do get a nice cushy recliner to sit in and a tv to stare at.  I loved that I just walk right in, tell them what I need, and go on my way.  The nurse takes my blood pressure (surprisingly low) and temperature, then asks me where I want my shot.  Arm or Hip?  Hip-hip-hooray!  I know, bad joke.  I try to keep track of which hip got it last, this time was lefty's turn.  Here it comes, "just a little stick."  "Ready?"  Yep.  Hit me with your best shot.  2mg of Stadol and 50mg of Phenergan.  If you've ever had Phenergan stuck into your hip, you'd know that it burns like the dickens!  Little prick, no big deal.  Stinging left butt cheek on fire. Oh yea, that feels good.  Not.  At least a nurse taught me years ago to lift my weight off of the foot belonging to said hip, that helps you not tighten your muscles while you've got a needle stuck into your butt.  Butt/hip? What's the difference?  Some nurses aim high and others low.    We won't mention the time I lost my balance.  It all ends up pulsing though my body eager to get to work on those damn screaming nerve cells.  It's about time something shut them up.  For a little while at least.  Now, I sit patiently and await the meds to work over the next 30 minutes.  Getting better.  Slowly, but better.  After checking on me every little bit to make sure I don't have some bizarre reaction, I'm released to go home.  Off to bed!  Sleep!  Please, oh, please, just a few hours of peaceful rest.  

I crash at the house and am finally getting some relief.  If only that could last more that a few blissful hours.  Not pain free, but much less pain.  What would a day without pain feel like?  I have completely forgotten over the past 7 years.  How would it feel?  Would I know what to do with myself?  Or would I waste it, that one glorious, sacred day?  Feet back on the ground, now.  I get all settled in and prepare to snooze away in peaceful slumber.   

Phone rings.  My phone ringer sounds like the song from the Twilight Zone.  Du, du, doo, du, Du, du, doo, du.  Wish I was stuck in the twilight zone, it sure feels like it.  I roll over about to ignore it, but picked the thing up and saw my neurologist's office was calling.  Hmmm, what could they want?  The secretary? desk clerk?  appointment specialist? let's call her, Sue is calling to tell me about the appointment she was setting up with a new pain management doctor in Memphis.  Good.  Nope.  A BIG, GIANT, ROTTEN, STINKING, PUKING, RAGING bad.

Noooooooooooooooooo, I'm in the Twilight Zone. Oh crap! Reality sucks!  The aforementioned  Pain Management doctor has reviewed my records and has decided not to accept me as a patient.  Are you kidding me?  Can he do that?  What?  No, really, WHAT???  WARNING!! WARNING!! Tears swelling.  Abort! Abort!

Breathe

Big Deep Breaths

Calming Breaths

Soothing Thoughts. 

Go to my happy place.

Hang up phone.  NOW cry like baby, while dog looks on thoroughly confused.  Oh, and she ended the phone call by saying my neurologist doesn't know anyone else to refer me to, but he will gladly give me a recommendation to any doctor or clinic I can find that will treat me.  Oh joy.  

Reality bites.

I gathered my beaten, battered, bludgeoned, and thoroughly murdered hopes up off the floor, put on my big girl panties, and called the husband to whimper and cry on.  He's a good listener.  He is wary of giving any advice at this point.  He's quite aware this is a dangerous moment and no matter which path he chooses (sympathetic or calm and reassuring) this is a volatile moment.  He chose quiet support.  Which of course my ranting self took as, "so."  BOOM  There went my dignity.  Not Calm.  Now Pissed.  "How can a doctor do that?  Now what am I going to do? I can't believe this?  Is there anything we haven't tried yet?  You've just got to be kidding."  Please be kidding, please.  Sorry.  Sorry.  I know.  Stay calm.  We will just keep trying.   Hung up phone.  

No way I was getting restful sleep now.  I knitted the five remaining rows of the headband I was working on.  I was so steamed, I knitted fast and furious.  The stitches were so tight, I practically needed pliers to get them to budge.  Somehow not feeling the therapeutic relief that usually comes with knitting.

Yep, I'm unique.  Now I can scare off a doctor by just sending him my medical history.  Great.

Tomorrow:  Happy Thoughts

Sis has Gone Techno

I'm so proud. My big sis has joined the blogging world. It's all about book clubs, book collecting, and Mini Coopers (hers is Simon). You can visit her here:
http://bibliominiac.blogspot.com/
Yea, big sis. Congratulations on your new blog. She definitely writes better than I do. I look forward to reading it a lot in the future!

Hubby and I are very sad this week. Garfunkel (the Mini) is an inpatient at our local car hospital. He is recovering from a minor car accident. His front bumper had a ding, because Garfunkel couldn't stop in time to avoid hitting the car in front of him. He's been sore for a couple of weeks now, but the doctor said he should be ready for release tomorrow. We will be so glad to have him home. Our no-name rental car just doesn't have the same fun, zippy personality.

I have been knitting like crazy trying to finish up two baby blankets and a pair of baby leg warmers. I consider it a record that the baby is only two weeks old. That's on time in my world. I am the Queen of Procrastination. I blame part of it on my migraines, but when I look back I have always been the Queen. Not the best title, huh?

Speaking of migraines. I went to the neurologist today. He and I are both concerned about me having to use so much pain medication. It seems that my head has started a battle that my body just cannot win. Head has waged war on my ability to accomplish anything. Head is most determined that I not be able to knit much, do housework, laundry or cook food. Head is winning. I can live with the no housework, laundry and cooking, but limiting my knitting is uncalled for! Poor hubby is holding up way more than his end of this deal. You know those vows we said at our wedding: for better or worse, in sickness and health, for richer or poorer, 'till death do us part. He has come to the conclusion that he got the wrong end of his vows. He got a wife that's now worse, definitely in major sickness, and he's definitely poorer from my medical bills and my inability to work. I think secretly he may be hoping for death TO part us. He did try to trade me back to my father after we had been married one whole month. That's when the migraines started. He decided, since father is a lawyer, that he should honor a contract protecting him from receiving a defective product. He wanted to return me due to a manufacturing defect. Hey, the father did help to manufacture me, didn't he? Yep, I'm guessing he had a part in it because I have my dad's brown eyes, long ape-like arms, weird long second toe and unexplainable like of all jokes dealing with poop and gas. I definitely inherited that one! Thanks Dad!! Go figure, the father didn't want me to be returned, said it was not in the contract he made hubby sign. Not kidding!! The father gave the husband a contract for dating my daughter when we were dating. What a great first impression. Should I mention the father was also wearing some sort of bizarre hillbilly/dork toothy mask thing. Lovely!

Back to the doctor visit today. I am being sent off to the third pain management doctor (about an hour drive). We agree that I need a pain management doctor that will believe in my pain and help me even when I don't fit into the typical box of normal pain management. I always seem to be that one unique case. I'm always that one person that gets that rare side effect. You know the one in a million chance kind (okay, maybe a million is stretching it). My neuro knows that about me. He told me last visit that it'd be no fun if everyone was the same, and it's good to be unique. UNIQUE!!!!! yeah. I just want to be a little bit NORMAL. Not totally (never was) but at least a bit normal. You know, like a regular person. Or maybe just a slightly sick person. I'd take that one. Constant back pain I could deal with, but not constant migraines. Whole 'nother ballgame! I declare here and now, HEAD shall not win this long battle. Eventually, Body is going to boot it out for good. (wouldn't I look odd without HEAD). Maybe Body can just retrain Head so that we can all get along.

The Scene of the Crime

We thought it was thunder, but it was only a little rain cloud. Then we heard all this crashing. NOT THUNDER!!! The big oak tree is the culprit. He was caught trying to vandalize the arbor in the back yard. Here's the incriminating evidence:

The vandal dropped a 30 foot limb onto our arbor. Can I just say how impressed we are with Phillip's construction capability. The arbor is still standing!
Unfortunately the evil vandal littered my brand new wooden walkway with almost all of my spinners. There are still 4 left standing, the last 20 are laying bruised and battered upon the ground.

The vandal even killed my windchimes. These are still intact.
Sadly, the ladybug was only left with one chime. I should probably mention here that the ladybug has been suffering from old age and only had two chimes and her glass marbles left. As you can see she lost her marbles, too. Poor old ladybug!
Maybe this was just the tree's way of helping add to our rustic arbor and redecorate.



Thanks a lot, Mr. Oak Tree. You better watch out we have the sheriff on the lookout for you. You can't hide forever.

What Now????

Just when I build up a little bit of hope that a new doctor is gonna help my agonizing migraines, my hope gets trampled on the dirty, stinky, rotten, filthy floor. Today I went to a new pain management doctor. He was a very interesting, funny, quirky guy. I really liked him. Don't get me wrong. He's a good doctor, but he trampled on the last bit of hope I had about a better future with less pain. I have tried almost everything available to migraine sufferers. This new doctor is on the cutting edge of the electrode implants for spinal stimulation and gives seminars around the World on the procedure. I read about him in our local paper and how he has cured a young lady plagued with chronic debilitating headaches with the implants. It has a little remote that she turns up when the pain increases and down when she doesn't need it so high. She is now returning to a normal life. So I thought, "What an opportunity!! This may be my cure!" WRONG!!!! As nice and great as he is, he is unable to help me. Let me try to explain.

Today was my first visit and he said if we tried a Greater Occipital Nerve Block and if it was successful I would be a prime candidate for said implants. Ooooh, cool! Instead of pain my head would tingle and the I would be free to mingle about and rejoin the world at large. Yeah.....happiness.....oh well......dashed hopes. The block would take effect immediately. He felt around on the base of my skull until he found my pulse. This is where he takes a needle and inserts it into my head. Now mind you, this man is wearing a pink, purple, and blue dog and cat scrub top, blue scrub pants, and an U of A hat on his bald head. He turns up the Led Zepplin playing on the speaker and said "I do my best work with music." I agree. I do too. Then holding his fingers on my pulse he grabs the needle and gets ready to stab it into my skull. Suddenly, he says, "Shit!" NOT what you want to hear a doctor say before his pokes a hole in your head. He tells my hubby to open the door and hollers at the nurse. He needed a smaller needle. Thank God! That was a scary two or three seconds. He couldn't get one because he didn't want to loose the spot where he had my pulse because as you can imagine it's hard to find a pulse point in a scull. New smaller needle in place. He says the typical, "Small stick." Yep, the sticking part is easy. You don't feel it that much believe it or not. Then comes the fun part. I'm sitting on a stool with my arms folded on a pillow laying on the patient table (this is the easiest position for this procedure). I had a previous doc who would have me sit in a chair with a nurse pushing on my head so I didn't move--NOT so pleasant. Okay, stick part is over. Now the UNpleasant part. The needle doesn't stay in one spot. The doctor has to move it around up and down and all over through the tissue in my head. My hubby sees him moving the needle up and down and all around while never pulling it back out until all the solution is inserted into my head. I would much rather watch this process than be on the receiving end. What I hear is, "Crack, Crunch, Crunch, Crunch, Crinkle, Crinkle, Crack." The pain is fairly intense and it's best to stay still, lo and behold you move with a needle in your neck! Don't wanna go there. I can hear the needle crunching and moving through all the very tense (as usual) neck muscles and what I guess is cartilage. Trust me this is not a sound you ever want to hear while someone has a needle next to your brain. Oh, I know, there's a skull between the two, but that is all forgotten when you hear that noise. I got goosebumps up and down my arms and legs the pain was so intense. But it's over in just an hour or so. Okay, One minute. What's a minute of pain if this is the answer I've been looking for, for 7 years now.

The nerve block is now in place. The numbness at the base of my skull started immediately. Feels like your lip does after a long trip to the dentist, large but numb. He left the room and said we'd wait a bit and see if the numbness continued to spread and eliminate all my head pain. And I came in with a whopper of a migraine ready to be cured. I sit with my head down for a good 20 minutes and he returns. I can see the disappointment on his face when I tell him I still have pain at the top of my head, on my right side by my ear and jawbone, and in my right eye. I should state the block was placed on the right side where the majority of my migraines originate. He decides to wait a while longer to see if it gets better. The numbness spreads, a bit more, but the pain remains in the other locations. He returns yet again and asks if any pain remains. I, begrudgingly, begin to answer when he gives me a most serious look and says, "it's very important that I know if there is still pain." "Yes," I said the pain remains. However much I liked him (and I really did in the brief two hours I had spent with him) he said the most unexpected and devastating thing I've heard: "I'm sorry. I can't help you." My heart sank into my toes. I wasn't prepared for this. I was expecting, "Great news, I can help you." I kept my cool, but I'm sure the disappointment showed. You could see it in his face, too. He really wanted to help. He is referring me back to my neurologist (whom I love, but we've tried everything he knows to try now) to continue my regular regimen.

I made it to the car. I hadn't realized I had built up so much hope for this appointment and a chance at rejoining society. I began to cry. Can I just say I HATE TO CRY!!! Not to mention my poor hubby trying to drive me home and soothe me at the same time (what a man!). Finally, I said, "If he can't help me, who can?" Not that I expected an answer. I wallowed in my self pity and tried to pull myself back together over the next few hours. I quit crying, but I had not expected to feel so disappointed about this. I had no idea this was coming. I was blind-sided. My doc and I have tried everything over the last 7 years: biofeedback, Thai chi, narcotics (which are my best friend for a brief few hours of peaceful rest and little pain, but alas that never lasts), breast reduction (to relieve neck strain), physical therapy, PFO (the theory that many migraine sufferers were cured when there was found to be a tiny hole in the heart. Once sealed, no more migraines, alas I had no hole. Now how many people do you know are disappointed there isn't a hole in their heart? ), acupuncture, visualization (find your happy place-I suck at that one), psychological therapy (which I've had plenty of and continue to have for the depression), medications of every kind from drugs for Alzheimer's disease, bipolar disorder, dementia, a plethora of depression meds, even one only available to hospitals and one that can only be purchased from Canada, the list goes on and on and on. So that brings me back to my question. What Now??