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

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??

How Migraines Affect My Family

Yet once again, I am up in the middle of the night due to a migraine. I am so exhausted words cannot convey my torment and pain. I feel my pain tolerance getting lower by the week, day, hour, every minute. I have always been known for my high pain tolerance. Let's just say that after almost 7 years of solid, nonstop pain, my tolerance is slipping. Just keep trudging through the muck and madness of it all.

Family.
Where would we be without them? Migraines don't just impact my life, they also affect my family. They who also are my support group. They encourage me to hang in there and not give up hope. My mom once told me that childbirth would seem easy as opposed my migraines. And she would know because she suffers from them too. Unfortunately, I will never get to experience childbirth. My husband and I really wanted children...then I got sick. There are so many things that have changed in life. It's taken me years to look at a friend's baby and not feel green with envy. I know my hubby would be the best dad; we have missed out on so much. We just try to go with the flow now. You see, it affects more than just me. My husband has to be the most marvelous, understanding, and patient man I have ever met. He sticks by me. He sits for hours in the Emergency Room in the middle of the night and still makes it to work the next morning. Countless times he's had to leave work to pick up prescriptions, take me to doctor appointments, and or make an emergency run for a rescue shot at my neurologist's office. He takes it all in stride, but I worry. I see the effect that my migraines have had on him. He suffers from depression, especially in the winter. It doesn't help that he lives with someone who lives like a vampire with all the curtains pulled tight and no lights on in the house until dark, if even then. Some days he has to attempt to watch TV with the volume one notch above mute because it seems to be screaming at me. He deals with the "pissy mood" that precedes many of my most powerful migraines. He often sees the signs of a massive one coming on before I do. I get very short tempered and easily offended (for no reason if you wanna take his side). I see him struggle to keep his sanity some days. He cooks, cleans, does laundry, and still loves me. I find that amazing. I do what I can but sometimes I feel so helpless.

Some days it's all I can do to get up and move around because my head pounds with every step. You get up and the pain surges. You walk and the pain surges. You stop walking and the pain surges. They are so powerful that I have to stop and grab the wall or double over until the surge passes. I'm frozen. Stricken with pain. Some day's just walking down the hall to the bathroom is agonizing and I'm out of breath (trust me when I say my hall is not long). My husband has to watch this day in and day out and there's nothing he can do. I know he wants to help. Everyone in my family wants to help. They patiently listen while I tell them how crappy my day has been, and yet, they still find words to comfort and encourage me. I see the pain and worry in all of their faces. I try not to feel the guilt. I put on a happy face; they see right through it. They all know that there will be days I won't be able to go anywhere. I will miss multiple family gatherings, or I will have to cut the visit short to lay down and take some medication or put a shot in my leg. I appreciate that they don't take it personally and understand that I'm trying my damnedest to be and feel normal. Okay, maybe just a tiny bit HUMAN! I have four nephews that graduated in the past 6 years. I've only made one graduation, only to have to make an early exit due to the noise, VERY bright lights and loud music. I watch them all feel helpless, wanting to do something to ease my pain, but at a loss for what to do. I know they wish they could make them go away. Family becomes very perceptive about some things. My mom and sister know that I talk entirely too much. If I don't call on a daily basis, they're calling me to check in and see what's wrong. They both have this weird migraine intuition that tells them: no call means bad head! Not good.

It's sometimes hard to sit back and observe your family's concern for you and not feel that twinge of guilt. I wish I could do more. I want to do more. I try to do more. They wish they could do more. I wish I didn't have to cancel once again! They wish that I don't cancel plans again. But the more I go, the more I hurt. The more I hurt, the less I go. It's a vicious cycle. I don't know what I'd do without them. Without their love and support I know I would never have made it through the last 7 years. I could never have made it alone. They care. They love. They hope. That gives me hope. And I thank God everyday for each and every one of them.