Botox or Not...That's a HELL of a question?

I received a letter from the Neurology Department at OHSU on 1/25/2017 and it stated that my headache doctor would no longer be giving Botox injections for chronic migraine relief. I've had these headaches chronically, daily, since 1995 when my youngest child was born. Have been considered "chronic migraine" having more than 8-15 per month since I was pregnant with my son in 1992. I have needed rescue meds and a preventative since 1975.

I hadn't had a migraine pain free day in over 15 YEARS until I got my first Botox shot last Fall. I was ecstatic! I was so happy! I wanted to go back to school, even with all the other pain I experience in my body! My first thought was...wow! I can get a loan and learn to do something else and go back to work. At 54! He He! I won't be stuck at home any more! I had my mind back, and I felt like a new person! And then it started to wear off in the end of January... I got the next dose.  I hadn't been warned about the extra almost $200 in Medicare Part B deductible that would be hitting the day of the shot. So the expense I expected to be $300-350 was almost $500. Then this letter. Saying the doctor wouldn't be giving the shots anymore, but that I was welcome to keep my appointment with her to discuss alternatives.

I've been living in alternative Hell since 1993, injecting myself with this or that, going from an upwardly mobile professional college graduate who proudly provided for her family to a marginal member of society who is treated as a cipher on the edge of the poverty line. You see, I'm one of those our President sees as getting a 'Free Ride.' I'd gladly give him my "free ride," any day and take back my health.

I've never been closer to suicide than I was that night. All because of a poorly worded letter. I'm crying even now writing about it. I don't think I'm strong enough to go back there to that place. The place of absolute constant excruciating agony.

I was prescribed Botox many years ago and couldn't afford the rates at the only doctor in our city who was trained to give the shots; she didn't take insurance or Medicare and the hospitals didn't consider it important enough to get people cross trained in administering them.

Now that I know there is something that actually can give some relief, I can't find the strength to abide in that unrelenting agony. My daughter called to talk to me at just the right time the night I received the letter and stopped me from doing anything irreversible, and made me promise to send a myChart message to the doctor to seek clarification. She even understood why my mind had been visiting the dark spaces it had been in.

My kids have lived through it all with me and know just how bad the pain has been. I have also seen them through a friend's suicide so my daughter knows this was nothing on her, but totally to do with how hopeless this letter made me feel and how truly despairing I was at the thought of being in that pain again.

People think, it's just head pain. It's just a headache. She's being a drama queen. How can she be so dramatic as to discuss suicide as if it's nothing. And I don't. Far from it. I consider it the most selfish, agonizing, and painfully inapproriate thing I have ever said. MY DAUGHTER'S BEST FRIEND IN HIGH SCHOOL COMMITTED SUICIDE!

This is far from drama queen theatrics or jokes for me. It's a living, grinding, daily, agonizing, hell on earth. Even people with migraines or clusters don't understand. They get relief. I NEVER do. Even people with arthritis or back pain, or joint pain or...or... I always say pain is pain and each person's pain is relative and subjective and it is their own private and personal hell they are living in. And it is.

 Mine is a trip to a screeching 18 month old screaming in your ears while the mother is scratching her nails on the chalkboard in your head and the teenager down the aisle plays his rap at 10 decibels above the legal limit for you to keep your hearing while you smell the dirty diaper of the toddler, the vomit of the rapper and his pot soaked clothes as if you were wearing them and the mother's cloying heavy musk perfume and hairspray and then the rest of the world would like you to be pleasant and hold a conversation while they breathe cigarette laden breath over your face and hot exhaust and asphalt fumes into your lungs all of which clogs your throat and increase the screaming sounds of the child and mother and teenage kid and the guy talking across the aisle from you and the car passing and the tires you are riding on and the annoying squeek in the seat and you hear it all through the earplugs you are wearing and see the glare of the sun and the lights through your prescription sunglasses over your glasses when you can bear to open your eyes to see...and this is only one 10 second slice out of 25+ years of what my life is like when I step outside the door of my apartment...Inside my apartment is a "bit" quieter and a "bit" less smelly....So sometimes the volume on the pain can be turned down, just a bit...until some smart apartment manager decides that air freshner is needed in the hallways, or a food that you've eaten 100 times before changes 1 ingredient and makes it "sea salt" instead of salt to be "healthier" and you didn't notice, or they decide to asphalt the streets without warning on the hottest day of the year and your air conditioner is on and pumping the polluted air straight into your house, or the upstairs neighbor uses dryer sheets and their dryer vents into your air conditioner, or a smoker stands right in front of the in take for your air conditioner, or your neighbor's music, TV, baby, toddler, dog, ...ad nauseum...I could go on for pages....or the weather changes. I'm not God. I can only control so much.

I've had people tell me to just think myself out of it. I "thought myself out of " Graves Disease, and into Hashimoto's Thyroiditis...I was taught meditation and biofeedback as a teenager for my migraines and learned to control my blood pressure and keep it low and steady during a migraine attack. ?Guess what, I now have syncope, the minitute my pain level spikes high for ANY REASON my blood pressure plummets like a rock and I faint. Do you think they're connected? They can't find a reason for the syncope. I can't control the fricken response now! And meditating to RAISE it SURE isn't the thing to do! Dumb ASS thing to teach people to do! if you could think through this kind of pain in your goddamned head I would still have a career. Hell, I'd still be able to balance a checkbook without making constant mistakes or finding out that I'm dyslexic as an adult. Wasn't THAT a kick in the pants. So no, I don't see this as really being something I can just, think myself out of. I DO wish I'd learned more about accupressure points when I asked my husband to study them with me years ago and he turned me down. But that's another post.

Suggestions Doctors and Patients

It took me being on disability for almost ten years to learn to say NO to doctors and tell them that I'm still in pain. Especially since, with the way disability is set up, doctors have ALL the economic control in my life. They control my family's economic future, and mine.

In order to have some quality of life, I and my husband learned to stay on top of issues when we could. I didn't consciously mislead doctors. I was female and a people pleaser. You're taught from day one to make people feel better. In the show, House, he phrases it as everybody lies. I don't think it is so much that as it is that everybody has their perspective, including doctors. That's the hard one to get around.  They are supposed to be there and unbiased to treat you. HA! As a migraneur I call Bullshit on the entire industry! I have had too many doctors in Emergency Rooms who have wanted me to put on a huge show of pain or have treated me as a drug seeker. I don't DO narcotics most of the time. They don't work well on migraines. They help with some of my other chronic pain conditions and I and my doctors have been discussing issues back and forth, but the current boogie man era of every one who is on a opioid is a drug seeker or drug addict is a crock of shit and it has been blown WAY out of proportion by a media that is looking for ratings. Responsible people who need pain relief were just barely being able to get it, and now it is becoming impossible again.

There are less than 1,000 Headache specialist neurologist in the United States currently. They have many other options to prescribe. And there are many people like me who have multiple pain conditions who aren't a one stop shop for easy answers. The human body is not a quick fix shop and the only way the doctor/patient relationship works is if the doctor actually listens to the patient and if the patient actually takes ownership of their health.  After 20+ years I finally have. Some doctors find this VERY disconcerting. But my primary care doctor is an Internist at Oregon Health and Science University Hospital and carries a full load teaching and a full load of patients. He is one of the permanent doctors on staff so he has a huge load and he is very receptive to working WITH me to keep me as healthy as I can be. I have finally discovered that by being just a bit bitchy in my old age and refusing to let doctors or nurses put me off I get better care. I make sure I ask the questions. If I don't feel like I'm getting answers, I outline my concerns in an email to the doctor before my appointment so we can discuss it. And if I don't get taken seriously elsewhere, I follow up with my own doctor and ask him who WILL take me seriously.

 But I've always wanted to suggest to them that they not prescribe any test however that they haven't experienced for themselves.

Most tests aren't too invasive or painful and don't do lasting harm and can be done to male or female, i.e. the mammogram,  and if some of the doctors and technicians who where performing these tests had to go through the procedures at their own place of business those procedures would be FAR less dehumanizing. 

I can tell you now that if a few more male doctors have to stand in a line wearing little pink half aprons over their Moobs (man-boobs) while waiting for the glass plates to squish them flat as they are told to cozy up to the cold @ss machine something would be done about the procedure *smirk*.