I received three letters in three separate envelopes from the state medical board. I tore the first one open; a single page with the name of the respondent at the top and an official signature at the bottom. “Dear Miss: We are writing to inform you that your claim will not proceed because there is not sufficient evidence…”
What the board was telling me is that my claim against three doctors is being denied. They saw my facial droop, my staggering walk, my shaking legs, heard my stilted speech, and then saw it go away when I tilted my head to manipulate the CSF in my cranium, and they wrote in my medical records that I was making it all up. It took me close to a year to get the correct testing after that. When I had everything together, I bundled it and sent it to the state including the disc with my complete MRI showing my brain had collapsed. I sent documentation from my previous surgeries. I outlined how their notes directly affected my life – both by delaying my care, and because I was denied by the Undiagnosed Diseases Network based on their notes.
The only conclusion that I can possibly come up with is that I’m a woman. Who could believe me? Why not attach a hinge to my cranium so I can flip my lid open for everyone to see, and then maybe, maybe, they will consider the notion that I’m telling the truth?
The irony is that this very place where these doctors work tweeted an article today about how there’s such a big gap in women being tested in healthcare trials, and how there’s still a huge gender bias against women when it comes to our symptoms being recognized and validated. THIS EVEN HAPPENS IN LAB RATS. So they are willing to admit it happens,
not willing to admit it happens with them.
Here’s another article that speaks directly to the phenomenon of being a woman in the healthcare system. Women are “emotional” and therefore shouldn’t be believed. By the way, female doctors can be just as unforgiving as male doctors.
I’m going to take a little time out to compare and contrast. I have a male family member who had rotator cuff surgery when he was a teenager, at least 13 years ago. He just had to have an EMG of his arms and possibly legs. I was explaining to him what to expect since his doctor’s office didn’t do a very good job. Let me emphasize that there’s a 13-year span between those two medical events. Yes, recovery from rotator cuff surgery isn’t pleasant, and an EMG isn’t pleasant.
In comparison, I’ve had 10 brain surgeries, 12 abdominal surgeries, 4 infections cut out, 7 crowns, 10 spinal taps, 2 EMGs (including my face), a year-long CSF leak, and a spinal blood patch in a 7-year period. For a lot of these I couldn’t have Lidocain because my body doesn’t metabolize it, and it’s the same for morphine. So every time I was poked or sliced or stitched, I felt it. I also tore the capsule and the tendon in three places in my left shoulder (but couldn’t get surgery because of all of the scar tissue I make). I’m also horribly allergic to my shunt that is still implanted and runs from my brain to my abdomen, so I constantly feel like I am being stabbed in my lower abdomen.
This male relative’s doctors immediately jumped at the first sign of his trouble. The help he has received is in stark contrast to how I have been treated, which is to be called a liar and to be treated as a hysterical woman. He was also considerably nervous about the EMG. I tried to reassure him that if he could get through rotator cuff surgery, the EMG would be much easier. Seriously, I would trade that CSF leak with just about anything. An EMG is a walk in the park.
So, what exactly do women have to do to “prove that they are in as much pain as men”? Shouldn’t it be the other way around?
It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.
One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?
Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.
So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc.I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.
It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.
This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.
In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him.The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.
Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group.
My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.
I’d like to take some time off from my daily life. I’m not sure if that’s allowed, since I have loads of time off already – my only job is to rest and get ready for the next doctor appointment. But still, I’d like to look at something other than these four walls. In fact, I’d like my old life back and a reason to take a vacation.
Anyway, yesterday was my birthday, and a couple of friends flew up from Colorado, and we decided to brave the largest art event in the U.S. – the Art-a-Whirl in Northeast Minneapolis. What was happening in one warehouse would have covered what most cities considered an arts festival, but this event takes over miles.We just stayed within the limits of where the complimentary trolley traveled. Even with the trolley my phone tracked 7,000 steps for me yesterday. That’s a personal record (and comes with a cost, because I’ll be in bed for most of the week with the exception of one appointment tomorrow morning and Wednesday morning). My legs were having none of it. They were starting to spasm in the last building we visited.
I did pick up one little piece of art, which reminds me of a line I’ve heard over and over in my dating life:
Half of the adult population around the globe has some sort of chronic condition, varying in severity. Some are lucky enough to barely be bothered by it except as a reminder on their calendars once every few years to get checked by a doctor for any notable changes. Others can’t move an eyelash without being reminded that their body has taken on a long-term burden and there’s no relief in sight. A huge majority fall somewhere in between. Because of this, and social stigmas falling away regarding the discussion of chronic conditions, the market is being flooded with all kinds of materials and “how to” manuals for coping.
Through the Chronic Illness Bloggers group, I was lucky enough to be given these two products as part of a product review through the Chronic Illness Bloggers network. Although these products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.
The two items that I was given in tandem were a documentary called “The Connection,” and a book called “The Whole Health Life.” I didn’t approach either medium with any expectations, which turned out to be a good thing, because I tend to be very particular and picky – I don’t want my movies or reading materials to be too “preachy,” nor do I want them to assume that I know nothing about my diseases. Most of the time I see manuals out on the market that are written with new patients in mind, not with 20-year war veterans like me.
First, I’d like to cover “The Connection.” I’ll admit, I reached for this first because I didn’t feel like I had the attention span to get me through a book right out of the gate. I was quite pleasantly surprised. It was a good pace, but not overwhelming, while still giving the audience constant reliable information to process. For instance, I learned about “medical hexing” – many patients are told by doctors that we’re not going to get better. Would you believe it if I told you that two weeks ago, my primary care doctor told me that I should just give up and accept that I will never find a neurosurgeon who will be willing to help me with another shunt surgery and who will take my tumor out? Boy, is that ever a hex! But a hex doesn’t have to be that obvious. It can be about giving you a pill rather than looking at your whole lifestyle and looking at what can be improved upon.
More points from the movie hit home for me, especially since I’m having such a hard time finding doctors who will help me. For instance, if I have zero support – friends, family, doctors – I’m three times more likely to die early. Luckily I have some really great family and friends. Also, belief is part of why we get better, but it takes both the doctor and the patient believing. So far, I don’t have the doctors backing me up. And I also learned from the film that our genes do play a major role in what we do develop as far as diseases go, but our life experiences and our environment also trigger the genes. In other words, you could be perfectly fine but if you go wading knee deep through an oil spill, chances are that MS is going to come leaping out that has been lurking all these years.
So if you haven’t picked up on it, the documentary “The Connection” got my attention. Because of that, I was confident that the book “The Whole Health Life” would be engaging – and it was. And that says a lot, especially coming from someone who has the attention span of a gnat at the moment.
As readers, we can spend more time on the book, relating to what the writer is saying about wading through the soup of pain and foggy brain, trying to get through an able-bodied world and looking normal on the outside. Immediately the author, Shannon Harvey, introduces the core concept: we cannot deal with health by separating “body” health and “mental” health. They are intertwined and inseparable. A pill may address one portion and meditation may address another portion and talk therapy may address yet another potion and engaging in positive social activities may be uplifting, but when consumed in isolation, they hardly make a difference. When combined, they improve a person’s well-being by leaps and bounds. Ms. Harvey breaks it down into 10 topics to easier process and incorporate the practices into daily living.
For me, meditation is difficult. As I mentioned before, my mind is more that of a squirrel than it is a turtle, but she talks about the benefits of calming the mind and recommends a few easy steps that anyone can pick up. Emotions logically follow right after that. What are we doing to process our emotions? What do we allow to play on our inner recording? And then there is the “placebo effect.” Let’s try changing the name of this, the taking of sugar pills and still seeing positive results, as if a patient has taken “real” medicine; what is really at work is the power of belief. The belief that a patient can heal and become well again (or at least have an improved life) that comes with the motion of the taking of the medicine is just as powerful as the drug itself and has been documented for hundreds of years; it’s why people “pray” when it seems all hope for recovery is lost.
Of course, on the physical side, what we put into our bodies and how we move our bodies makes a huge difference. Eating the foods that are the best for us, sleeping the right amount and exercising to the best of our abilities are all important in our recovery and maintenance.
As a “spoonie,” as those of us are known who have chronic conditions that cause fatigue and pain, many of us keep blogs, as I do, as well as participate on social media like Facebook, Twitter and Instagram. We seek out others who are like us. We appreciate having others who understand our daily (and sometimes hourly, minute-by-minute and second-by-second) struggles. I think that “The Whole Health Life” would be a good book to read and re-read because we tend to get stuck in patterns that reinforce the negative feedback loop – myself included. If someone isn’t feeling up to concentrating on words, then they can sit back and watch “The Connection” for some reinforcement.
Please visit the documentary movie “The Connection” here.
You may purchase the book “The Whole Health Life” by Shannon Harvey through Amazon here.
***Scroll to the bottom of this review for an updated offer starting in January 2019! A new, improved Oska Pulse is now available, with a better grip and longer running cycle. Just use my coupon code of SICKDATING.*** And as of March 2020, I used it to take down the inflammation in my chest due to costacondritis – inflammation of the cartilage in my sternum. Boy, if you’ve never had that, it feels like a donkey kick to the heart.
People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
First, let’s talk about pain. I’m an expert on it. I’ve been an old lady since about the age of 23, when I got my first diagnosis of fibromyalgia.
It hasn’t stopped there. Now that I’ve had 10 brain surgeries and have been bedridden for 10 years, I have some very specific challenges. Staying in bed triggers the fibromyalgia. But I have to lay flat because when I’m upright, fluid pools in my brain and presses on my midbrain and spinal cord and causes all kinds of balance, vision, and pressure issues, and puts me at risk for seizures and strokes.
For three years I had surgeries on the right side of my body and could only lay on my left side. That put tremendous strain on my left shoulder. Four times now I have had to go through physical therapy to treat an impinged (“pinched”) nerve in the shoulder. For this last year, however, the pain was much, much worse – so bad, in fact, that I broke six teeth because I was clenching my jaw in pain. My doctors finally figured out that I had torn tendons and the actual capsule that houses the shoulder bones from all of the time I spent on that side of my body.
We tried everything: ice, heat, anti-inflammatory meds, low-grade opioids, muscle relaxants, meditation, stretching, a brace during waking hours, a brace during sleeping hours, multiple injections, light weights, joint manipulations…everything except sacrificing a chicken. For an entire year, I was in incredible pain. I couldn’t even close a cupboard door.
The surgical site side was changed to my left, so I started having to sleep only on my right. That gave my left shoulder a break, but then I started having problems in my right hip. I have to use a cane for walking because of my terrible vertigo and I walk with the cane in my right hand because I’m right-dominant, and I knew I was really going to be in trouble if both sides of my body were going to be rendered useless by pain.
Then I was contacted by Oska Wellness, Inc. to try the Oska Pulse.
Where do I begin? First, it actually physically looks too good to be true. That was my first, honest thought. How could something so small and seemingly simple do what nothing else that doctors were trying to achieve for an entire year, throwing everything they had at me? I mean, come on – a little space ship? And we all know about those devices from those ads on TV that never amount to anything but you can get them for 3 easy payments of $29.99, and they sit in the back of your closet until you move or you divorce…
But the Oska Pulse isn’t that. “Oska” – Australian for Oscar, the name of koala who was helped by this device after he was badly burned by a fire!
The Oska Pulse is a battery-operated, rechargeable device that gives off a pulsed, electromagnetic field to treat pain and edema. That’s the very simple explanation.
So the Oska Pulse turned into my chicken sacrifice, if you will. The note card that came with it suggested that for chronic pain, I should wear it 4-6 times at the site of pain for the first week. I immediately pushed the little round button that you see at the bottom of that picture above and placed it on my shoulder.
Now, the Oska Pulse comes with a stretchy sleeve with Velcro closure if you want to strap it on and have it stay in place. I tried that, but since I don’t get up and move around much, I quickly determined that I didn’t need to do that. You can see by the fuzz on the device that there is some grippy rubberized material on the Oska Pulse that is good for keeping it in place. All I had to do is prop the Oska Pulse on my shoulder, press the button, and let it do its thing until it beeped at me three times to indicate it was done.
After the fourth day, I started to notice a difference in my shoulder. I could pick up items heavier than a magazine or an empty toilet paper roll. People, this is huge: I already automatically lost the use of one hand because it was always occupied by the cane I had to use to assist me with walking. I can’t stress how bad this was, especially since only yesterday I got the last of my teeth replaced from all of those that I had broken in pain. I started being able to reach all the way over my head, and I was able to increase both my repetitions and the weights of my physical therapy exercises.
So after I saw success in my shoulder, I started moving the Oska Pulse around my body. This little guy was getting a workout! But that’s okay! The Oska Pulse stays charged for about 15 sessions, and then it needs another charge. The charger can be hooked up to a laptop or it can be plugged into the wall socket, as it has both capabilities. Here is the Oska Pulse in action, in the elasticized sleeve with the blue pulsing light on. You won’t feel a thing, truly. There is no buzzing, so the blue light will be the only way you know that it’s on. Are you shocked? You shouldn’t be! This is a device where taking away your pain will be completely painless. That is the best part about the Oska Pulse.
I didn’t tell my physical therapist about the Oska Pulse when I went in for a visit after not seeing him for a month. He was expecting to see as much improvement as he had seen the previous months, which was zero. Instead, he was stunned to see me lifting my hands over my head, bearing weight, and best of all, wearing an underwire bra that clasped in the back (previously the girls had been relegated to a sports bra that I could twist into with one hand that left them sadly sagging and flopping like I’m undeniably mid-40’s, which I am, and does nothing for me being able to attract potential suitors, even under false pretenses). My physical therapist was ready to doubt me or tell me to back down, stop being so enthusiastic, to slow my roll; but he nearly fell over with how well I was doing. He was stuttering.
This is a long post, but hang with me a little longer. I gave up my Oska Pulse, and potential pain relief for a time, because I wanted to know if it was just me. Was I just thrilled to get this product and was I blinded by the blue light?
I had given the team at Oska Wellness a heads-up that I might be doing this, but I gave the Oska Pulse to my sister for a test drive. I didn’t tell her much – only that she needed to charge it if it didn’t stay on for at least 30 minutes when she turned it on, and that she should wear it on spots that she was having pain. I gave her the instructions, the charger, the unit, and the stretchy band with the sleeve, and set her free. I did tell her that it worked for the COO’s dog when the dog was in pain because I knew that would tug on my sister’s heart strings – her dogs come with her to work every day, and we are all suckers for their love. If the Oska Pulse objectively worked for the dog, why couldn’t it work for us?
She made an effort to religiously wear it for two weeks, during which time we didn’t discuss the Oska Pulse at all. She didn’t tell me where she was placing it or how often she was using it. At the end of the two weeks I asked for it back and checked in with her. She had decided that she needed help with her neck. The easiest way for her to wear the Oska Pulse was to slip it into the flipped down hood of her hoodie – she didn’t even have to strap on the elastic band, and no one had to know she had the Oska Pulse going. She opted not to try to sleep with the device going and just deal with it during waking hours.
Her conclusion: She has greater range of motion in her neck and less pain. She used it only on her neck and no other areas of her body. I’m not going to reveal her health conditions, but they are just as serious and chronic as any of my fellow chronic illness bloggers. I honestly don’t know if she’s going to be missing it in a few days, but I can tell you that I missed the Oska Pulse terribly while she had it, because pain started to creep back in. Now that it’s back with me, I pretty much have it duct taped to me – I’m not going to give it up again. I have it working on my right hip and the bursitis that has developed there.
Informational: A third-party, independent study showing that Oska Pulse can significantly reduce pain and improve mobility.
And isn’t it great when you can actually see that the Oska Pulse is clinically proven to reduce pain, like it is here in this study? It’s a double-blind clinical trial with a placebo! Super science!
Benefits of ordering a Oska Pulse device:
– Drug free
– No known adverse side effects (but please keep away from medical devices affected by magnets including pacemakers and adjustable shunts)
– Internal battery lasts up to 4 years
– 30-day money back guarantee!
NEW FOR JANUARY 2019:
The NEW Oska Pulse is now available for $399, but you may also use my coupon code of SICKDATING and get $55 off for a total purchase price of $344! Its running time is 90 minutes per session and it will run 20 hours before requiring recharging.
Also new for 2019:
I managed to develop CRPS (Complex Regional Pain Syndrome) in my right hand and wrist. They swell up quite large if I use them at all, even for simple things like grasping a page or two of paper. The Oska Pulse was successful in bringing down the swelling after only two sessions. Although it hasn’t cured my CRPS, I am using my Oska Pulse like crazy to help manage it.
Here is a video explaining and demonstrating the Oska Pulse!
Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
Three decades ago, my classmates would endlessly remark upon my excellent posture. I was attending a high school for the arts (think “Fame!”) and my art area was theater, but of course like most students there, I dabbled in multiple areas, so I picked up some things from dancing. Even when we sat on the floor of our black box theater in a circle I wouldn’t slouch. I wanted to have a strong back.
Boy, I miss those days. I’m 42 years old now, and I’ve spent the last six years in bed because of a mystery problem with my cerebrospinal fluid that is made worse when I sit upright. Laying in bed has weakened my core muscles and changed the natural curvature of both my cervical (neck) and lumbar (lower back) spine so my spine doesn’t have the “S” shape it should. For the most part I lay flat but I elevate my head slightly so that I can see my keyboard of my laptop, which is propped up on my stomach by a tilted laptop cooler.
For the last twenty years I’ve worked in some capacity in the technical field thanks to a boyfriend getting me interested in computers fairly early in my adulthood. Strangely enough, the posture of the techie and the posture that I find myself in when I am on bed rest are very similar: It’s an annoying “tech neck.” People in the technical field, and in fact, people who are stuck in front of a computer for 8+ hours a day end up in the same pose: shoulders slouched, head thrust forward, neck vertebrae compacted and misaligned.
Now that I’m pointing it out, you might even be shifting around in your seat to correct your posture, or noticing it more in the people around you, like pedestrians crossing the street who won’t even look up from their smart phones. Yep – there’s the “tech neck.”
How about a visual?
Even the slightest tilt of the head forward puts tremendous strain on the neck muscles and bones. Rather than adjusting the screen to a higher elevation, we tend to alter the position of our heads so that we are constantly in a hunched-over position – and we wonder why we have so many headaches!
But now that there’s been years of damage done, sitting up straight isn’t going to cure the numbness and tingling in your arms and fingers, or the stiffness in your neck. Of course, do sit up straight, and do take up your company’s offer to bring in someone who is trained in proper ergonomics for adjustments to your desk, but in the meantime (and for the long run), this product can offer you immediate relief. Sometimes it takes a village, right?
There is a family of products available through the Posture Pump® company for back and neck problems that addresses multiple issues, and the Posture Pump® Dual Disc Hydrator® (Model 1400-D) is going to save my neck.
I already have spondylosis, which is a very technical and general way of saying that I have degeneration of the spine, and stenosis, which is a narrowing of the canal where the spinal cord passes through the vertebrae. I’ve got pain and stiffness, and my arms are tingling and spontaneously going numb because of the degeneration and narrowing happening in my neck.
Here’s a video on the Posture Pump® Dual Disc Hydrator® (Model 1400-D) and you can easily see how it works and how it can help you. Click on the link below.
To summarize, there are two air chambers that work on the neck and upper back area to realign the vertebrae to the natural “S” curve and relieve the pressure from the “tech neck” we have unwittingly positioned ourselves into. Ultimately the neck then benefits by being able to get nutrients and hydration to the discs in the spine, and range of motion improves. And headaches? What headaches? Wouldn’t it be nice to send those packing? You just need to lie on a flat, firm surface, strap yourself into the Posture Pump® Dual Disc Hydrator® (Model 1400-D) , and use the dual hand controls to get relief in just a few minutes’ time.
This product is made in the U.S. with quality materials that are meant to last – one lady has had her Posture Pump® for a decade! The company has other items that may serve you well too – check them out! Posture Pump
I pride myself on being a college-educated woman. The education came at a steep price. The student loans will likely haunt me long past my death; I only finished two years ago, and I was even handing in projects while I was in the ICU recovering from my many surgeries.
My education is not strictly located in books, though. I have traveled through 36 states and 7 countries in 20 years, and moved across the U.S. 4 times. As my friend pointed out on Friday night, I seem to be able to talk to people wherever I go (I didn’t realize anyone noticed!). Sometimes I hang back and observe, and there is a lot to be learned by listening and watching body language.
I have never liked Donald Trump. I was never attracted to his slicked-back hair and definitely would not have recognized him if I stumbled across him in the 1980’s or ’90’s when his star was rising, and I couldn’t stomach his show for even one hour when “The Apprentice” started airing. I didn’t understand the appeal of him being put in front of a camera for being extra nasty. I never bought into the idea that it was being played up for entertainment; I actually thought that he was even worse than what we were seeing.
Now here we are and somehow he has slipped past all of the 14 other candidates for president and it’s the last few weeks before the big election. Here in Minnesota we’re allowed to vote early by absentee ballot, so rather than join the crush on voting day, I made arrangements to go to the county office at a time I knew it would be much quieter. It took me about a half hour to fill in all of the boxes manually for all of the different options. We had state representatives and judges that needed votes as well as the president and vice president. Luckily Minnesota is still using paper ballots – so many states tried to go electronic and the glitches resulted in votes disappearing forever, and Republicans winning votes where they might not have.
In case you haven’t guessed yet, I didn’t vote for Trump. I happen to be a few things he hates: a disabled, fat, bald woman who will never compete in beauty pageants or for his attention. But here’s a more comprehensive list of why having him as president would pretty much guarantee that 99% of us would be dead by February 2017 (or there would be a coup, but that would require people getting off of their asses and abandoning their cats).
I attended a school in a very rural area of Minnesota for five grade levels before I moved back to Minneapolis to finish school. Some of those classmates are now friends with me on Facebook – or at least “friends” as Facebook defines us. But we have led very different lives. As much as I have ventured out on my own since the age of 16, the majority of them have stayed very close to home, married very young (some even fellow classmates), had children, and some have already started working on grandchildren, even though our age range is only 41-43. Collectively and in general, they are afraid of anyone who isn’t white and Catholic; Lutheran is marginally okay, even though those fuckers don’t kneel. You’re fucked if you’re Jewish in that area. There’s been a mighty wave of Muslim Somalians of course, and the white folks are scared shitless. Trump seems like a white-orange god because he makes them feel secure – walls! Muslim registry! Deny entry to any more Muslims! All Mexicans are bad (except for tacos)! Um…money! (Shhhh, don’t say anything about the fucking bankruptcies. He was smart for dodging taxes, you’re just jealous because you’re not as smart as he is.) And the creme de la creme: GRAB WOMEN BY THE PUSSY! He sure tells it like it is!
Well, let me tell it like it is.
First, let me drop in a little truth bomb. I had my genes analyzed through 23 & Me just to get the raw data because of all of this rare disease business and to see if they could pick up anything identifiable, and something that came up on my mitochondrial DNA (mom’s DNA) is that I’m Yemeni Jewish. That’s right, fuckers, I’m Jewish. Yemeni Jews happen to be the oldest lineage of Jews, desert dwellers who often converted to Catholicism in order to avoid being put to death, which is likely what happened with our family somewhere along the line – we’ve got bishops and nuns. Jews who converted to Catholicism became self-haters publicly to save their lives. I’m a survivor.
Second, I feel like we are moving backwards in time. Trump is just a very obvious sign of it. Here we are in 2016 and a swimmer gets 3 months in jail for raping an unconscious woman in a back alley because a judge feels sorry for his potential swimming career; young men are deciding that as a reaction to women trying to get equal rights and pay to men, there needs to be a movement called “menenism” where their “grievances” need to be aired (and though it was started as satire, I’ve been personally targeted numerous times on Twitter by guys with the “menenist” agenda – mostly ending with “shut up bitch what have you done nothing,” so of course I’m mentally correcting the punctuation); and now females aren’t going into medicine in equal numbers to men.
When I was debating the Trump vs. Hillary vote with these former classmates and they were telling me why they thought Trump was still “better”, and here was the list that one of the debaters came up with: Instead, I suggest folks vote based on simple, concrete (non-emotional) things like
1. Who will keep us safer?
2. Who will keep the government out of my health and education choices?
3. Who is LESS LIKELY to be swayed by bureaucracy?
3.5. Who is least likely to fu*k up our economy further?
4. Who hasn’t been linked to several national security leaks?
5. Who hasn’t been linked to voter fraud?
6. Who hasn’t been linked to multiple nefarious deaths to those opposed to or threatening to them?
7. Who HAS BEEN?
This was my response: Okay, I’ve gotta jump in on this, because I’m a little worried about just where the “facts” are coming from. First of all, we have a pretty solid idea of how Trump is going to treat certain issues.
1. Trump is going to be just as challenged with geography and world events as Palin is.
2. Trump needs to stay away from my vagina and needs a thesaurus because he only knows the word “tremendous” – so do you really think he needs to be in charge of determining how education is either built up or broken down?
3. Trump is easily swayed by anatomy, money, perceived power, hair spray and dementia (his own). 3.5. Are you guys really okay with the number of times he has declared bankruptcy and denied payment to all of his contractors, big and small?
4. He leaks what’s going on through his brain (i.e.: “I don’t pay taxes because I’m ‘smart'”) – pretty sure he shouldn’t be trusted with nuclear bomb codes.
5. He doesn’t have a voter fraud record because he has never had an office that he has been voted into; he has bought all of his offices. And then filed bankruptcy. Multiple times.
6. Multiple nefarious deaths….well, that comes with the territory of being American, doesn’t it? We’re all bullies. We don’t take time to listen or understand or practice any diplomacy.
7. Silly question that is more like a bumper sticker and carries no meaning.
Then one person asked how I felt about “all” of our health care providers supporting Trump?
I’m going to let the “all” slide because I don’t think that’s the case, but I am personally struggling with getting adequate care, and I truly think it’s because we have a boys’ club that is going strong still. Right now the breakdown is about 70% male and 30% female doctors, and I really do feel like my female primary care doctor isn’t confident she can stand up to the male specialists who misdiagnose me. Because she can’t, it really, really fucks me over. It fucks over my case with the undiagnosed diseases with the NIH, and it fucks over my case with disability.
I’ve been struggling with the right way to put this into words, and it’s a little more complicated. I have a deep mistrust for doctors at this point in my life. I expect them to let me down. Last week when I had my appointment to follow up on the testing for the mast cell disease, I barely slept three hours the night before and fully expected to be sent away, just like hundreds of other times. So right now, if I even have the slightest hint that someone worships Trump and his hatred for women besides as sexual vessels, I instantly get anxiety.I can’t trust that doctor to write objective notes in my file and I can’t trust that doctor in my personal space. This is not unfounded.
But the truth is that most doctors won’t talk politics freely. I just have to trust my instincts and read the doctor’s body language and figure out if he’s an asshole the old-fashioned way.
Thursday was a gorgeous day by Minnesota standards in September. It was bright and sunny, no clouds or humidity, warm enough still to wear sandals and short sleeves. I caught some pictures of flowers and bees and captioned them #winteriscoming (because I’m not fooled – this is, after all, Minnesota, and if you can’t tell, the second one contains a bee):
I had just settled back in my bed after the short bus had shuttled me to my errands when my cell phone rang. The ID said it was the U of MN clinic. I thought at first that it was a reminder for my appointment on Monday, but usually I get those on my home phone, so I quickly dismissed that thought and picked up. It was my orthopedic doctor – not his nurse, but the actual doctor who has been dealing with my left shoulder. I couldn’t help but immediately be on guard. He said my MRI results were in and that I indeed had a significant tear in one of my tendons and also in a labrum as well as tendinosis, and that I had choices: I could go on anti-inflammatory meds, I could get steroid injections, I could continue with PT, I could get a surgical consult. I asked him if he could do an injection on Monday when I saw him. He asked me if I would be okay until then.
I’ve been breaking my teeth for months now and begging for help and begging for an MRI, and he’s suddenly worried about me being okay for a few days now that he’s discovered that I have some significant tears?
Someone get this man a medal.
I asked him if he wanted to delay my appointment past Monday for some reason. He said no. I told him that I had been in pretty terrible pain up to that point, so what did a few more days matter? I’m not sure what he was offering besides that because he didn’t say, “Hey, I can make room for you during the day tomorrow,” and he didn’t say, “I can call in a prescription for you to try to make you more comfortable.” He just said, “Okay, if you don’t have any questions, then I’ll see you Monday.”
I have no idea why he called unless he was just trying to shave some minutes off of our appointment time on Monday so he could have the needle ready. Maybe he was trying to make himself feel better.
Without histrionics, I will say to him, “I told you so.” I will have a question for him on Monday, and that will be this: Do women not get tears in our tendons in our shoulders? The answer of course is of course not – obviously women do get tears in our tendons. We just have to do a lot more to be believed, like dragging our limbs behind us in a wheelbarrow.
I don’t have any idea how often this happens, or who determines it, but supposedly, Mercury was in retrograde as of Thursday this week. Why don’t frogs just rain down from the skies and we can all just be done with it? No, the psychic attack is much more stealthy, I think. The back of my neck aches. My gums and mouth burns and everything tastes metallic. I fervently wish that Facebook incorporated a disgusted eye roll emoji in their current six options, up from the original singular thumbs-up option. My inner dialog changes: Get out of my way. Stop kicking my goddamn cane. Your perfume smells like cat piss. I’m not waiting 45 minutes this time before calling in to see if they forgot me again, I’m only waiting 30. I am going to scrub my fucking toilet until it fucking sparkles.
Even before Thursday hit I could feel the earth boiling, and my mood was cooking right along with it. I encountered my first troll on Tuesday night. A friend created a private Facebook group so that (mostly) she and the rest of us could say things that couldn’t be said unfiltered in front of a wider Facebook audience. The creator also uses the page to talk about her new grandchild, so obviously it’s not as restrictive as she originally intended. Anyway, a mutual friend was going through a rough patch with her boyfriend and had already talked about it at a coffee shop reunion the week prior, so when she posted in the group, she was just looking for further confirmation that she wasn’t being too harsh in her judgment; after all, when you are the one in the situation, it’s difficult to be objective. This jackass dude pipes in and starts criticizing her and tells her that she’s probably not communicating correctly or enough with the guy she’s in the relationship with – not at all helpful.
Knowing what I know of my friend, and knowing what I know of the guy she’s dating, I don’t hold back on the troll. First I tell him that she DOES and HAS communicated clearly what her boundaries are and that they have been violated repeatedly. Every point the poster or I bring up, the troll says we’re wrong. Then the troll starts talking about how this always happens to him, that he’s always attacked for having a “different viewpoint from most everyone else.” I told him then that it’s because he’s condescending and he has contradicted everything that the original poster and I have said. He said “No, I haven’t. Tell me where I have. I genuinely want to know.” So instead of turning the post into everything about him, I tell him to go back and read. His reaction is to laugh. Obviously there isn’t anything “genuine” about this jackass. The final straw is when the troll claims that we shouldn’t be “defensive, that he is only being inquisitive.” My response was, “You’re not inquisitive, you’re correcting both ___ and I, so that does not constitute a “different” perspective as if it somehow elevates you, it just makes you repulsive.”
But then the owner of the group starts posting paragraphs about how we’re supposed to play nice. Then there’s more posts about how disappointed she is about our behavior and how she wants to shut the group down…but she doesn’t, because other people chime in that despite the fact that I’m a bad apple, the group is a “good idea” and some people claim it’s so great that she should “go global” with it – as if talking behind backs is a new concept. If that’s the case, I’ve got some oceanfront property in Arizona to sell to them. Lots of sand.
Troll #2 happens the next day, when I talk about this conversation. He listens for a few minutes, then bursts in with, “I HATE MEN!” As if I, Chelsea, hate men. I don’t. I do, however, hate men who: Lie, cheat, steal, are alcoholics/addicts, are abusive, are lazy, are filthy, are racist, are bigots, pollute, smoke, chew, are narcissists, and hate animals. I’m sure there’s more to the list, but that covers it for now. By the way, Troll #2 fits into quite a few of these categories. Hey, does someone smell butt hurt?
Troll #3 is on Thursday, the big retrograde day. I am pulled into a discussion about racism and white privilege. The person who tagged me is Native American, and the other person is white (and just happens to be an editor for Bloomberg and fancies himself to be an expert on the world and all experiences, like all white guys). The Native American wanted the privileged white dude to know that every other white person didn’t share his smugness. What it boils down to is that the white guy claims that no matter what, all people suffer, so racism, sexism and bigotry don’t actually exist, and we should just get over it. The examples I gave him – white men kick my cane when I’m in public, but women and just generally people of color don’t kick my cane; or white men shoulder check me – probably doesn’t happen, or if they do, they happen because people are just being shitty to me and it doesn’t have anything to do with privilege. He told me I needed to be friendlier (as in, “You are a woman, so you owe it to me, a privileged white male, to smile at me”), so I told him he needed to stop being a dick.
I’m not sure what the cure is. I don’t know how long this shit storm Mercury started lasts. Mercury is an asshole.
Today I had another dental appointment, my second for the week. I had thought this would be the “easy” appointment because we were just fixing a broken filling in the back right bottom tooth, part of the whole series of fixes that are a part of the issues that are being caused by me clamping my jaw in my sleep and cracking and breaking all of my teeth because I’m in so much pain.
I should have known that the first bad sign would be the pedestrian who walked out in the middle of the road without warning. My cab driver slammed on the breaks and left us both gasping, and then swearing at him; he just strolled slowly as if he didn’t care that he had just tried to compete with a couple of tons of metal and his human body sure would have lost if my driver would have been any closer whilst trying to slam on the brakes. Maybe he was tired of his life and thought today was a good day to die. Maybe he figured he was just a short ride from five different hospitals and it would be a couple of free nights of room and board with painkillers as the cherry on top. Whatever his reasoning for being a jackass, I was ready to open my door and beat him with my cane. Fortunately for him I was running on 80% blindness, a torn left shoulder cuff and an appointment to keep.
I was called back for the appointment and the assistant introduced herself as Brittany. After she got me set up with the bib and the ugly-ass biker sunglasses (because that’s all the rage now, for dentists to put safety sunglasses on their patients while they drill and shine bright lights in our faces – but really I think it’s so they can’t see us crying), the assistant dentist came in to start me on the Novocaine shots. She informed me her name was Brittany too, so I was officially being worked on by two Brittanys. Yea for something easy to remember in case I had to yell!
The assistant dentist put the swab of numbing gel in my mouth and I thanked her, telling her that the main dentist didn’t do that at all on that side for me on Tuesday. I said I believed that he was trained in a war zone. Both of the Brittanys got really quiet and looked at each other over my biker glasses, and then the assistant dentist tried to make a weak joke, like “Oh, you know, going to dental school is kinda like training in a war zone, ha ha!” and I said, “But I’m right, aren’t I?” and they said, “Yes, you’re right.” Okay, score one for me and my ESP. Sometimes I don’t always like to know everything, but lately the universe has been finding ways to make sure I know. None of this blissfully unaware shit.
Assistant dentist Brittany started doing the shots. As usual, my heart rate started jumping up. I felt like there wasn’t a lot of numbing going on though. So she went for another round, this time going on the inside of my teeth along the gums. The Brittanys went away for a while so the numbing could kick in, and I did a few exercises with my mouth to encourage the Novocaine to spread, like silently mouthing “Unique New York.” I could feel my right jowl going numb, buy my tongue and inner gum line were still feeling normal.
When the Brittanys came back in, they decided to start drilling. I warned them that I still had feeling, but they guessed that I was just feeling pressure or temperature. Now, kids, I know the difference between pressure and nerve pain – I’ve been through 9 lumbar punctures and they’ve hit my nerve bundles with needles every time, it’s really freaking unpleasant, and it can’t be compared to feeling a little cold. So after the third time I said “Ow!” from them hitting a nerve, they finally relented and assistant dentist Brittany did a third round of Novocaine. She told me I should feel the difference immediately. I told her that I didn’t. She sighed, went in for round #4, all along my gums on the right side and hit the juncture between my upper and lower jaw, and gave it a few more minutes to kick in. Finally it wasn’t completely numb but it was just enough numb that we could drill for about four minutes and get the rest of it taken care of.
Generally speaking, most dentists and assistants can handle two instruments apiece. Assistant Brittany was struggling with two straws and a mirror and I was nearly drowning, so I offered to do what I did before – I held one of the straws and kept my hand out of their way while they did the rest. They thought it was great.
The most difficult part was the filling. They were trying to keep the very back tooth dry while they put in a white resin filling (because I’m allergic to mercury fillings so it had to be the resin), and they were doing all kinds of things like moving my tongue and putting cotton wads in my mouth and triggering my gag reflex. They actually got me so badly that I thought twice I was going to throw up all over myself, and at one point I had grabbed their hands because I was ready to move them out of the way in case that happened. I had tears streaming down my face again. My stomach heaved. The Brittanys cooed above me, “I know, I know, it’s terrible, we’re trying not to make you gag, but it’s in the toughest part of your mouth to get to, try to think happy thoughts, wiggle your toes, oh good, you already are, just about three more minutes now, try not to throw up, we’re nearly done, you’re doing great, you’re doing really great, it’s almost time, that cotton is awful, what do you have for plans this weekend?” It was absolutely ridiculous. I checked my makeup afterwards; I expected to have trails of black eyeliner down to my chin, but I had forgotten that I had sealed it this morning in anticipation of the shit show and it had survived quite nicely. (Side note: I strongly recommend eyeliner sealant available from Meow Cosmetics – it’s the consistency of water and you put it on sparingly and must let it dry, but man, it is GREAT for keeping your makeup on longer!)
This is how I think I can help, as a patient: Have me sit upright for the first part of it so I can help position everything like wads of cotton; if I know where it’s supposed to go in my mouth, I can probably make it happen without making myself vomit and without having to fight gravity so hard. I know that they were trying to get everything done as quickly as possible, but just like I helped with the straw, I can also help with stuffing cotton in my mouth and not barfing. If I can handle my Ren & Stimpy nubs for teeth to eat with for weeks, then surely I can handle that.
Just as the Brittanys predicted, as we’re rounding up to dinner time, I’m starting to get some feeling back in my mouth.