Oooooo, That Smell!

For those of you who don’t know me in real life, I am a Taurus (for what it’s worth – not that I base my life on astrology), and we’re known for liking the finer things in life, including the best tastes, the softest fabrics, and the most enticing smells. I couldn’t wait to try this product out because it is both aesthetically appealing and I knew it would throw wonderful flavors into the air, making my Taurus heart sing. (Please note that 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 remain my own and I was in no way influenced by the company.)

I was provided the “Raindrop” version of the essential oil diffuser by Organic Aromas; the base is available in a light wood color (pictured) or black.

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At first when I opened the box and glanced through the directions, I wondered if this might be something complicated. After all, there’s a lot of parts – the base, the receptacle, the top, the power cord…and here are the instructions including how to put everything together, and how to care for the piece:

But I think what it comes down to is that the company put a lot of thought into how to make a product that is both beautiful and durable. This isn’t something that you want to have break on you within six months or get so full of gunk that you have to invest in another one. Part of our responsibility in our commitment in striving to use items that are recycled and/or organic and/or generally good for us and our world is that the goal is to not add to the waste exponentially in our landfills and our oceans by not caring for what we build and use. So if you decide to purchase this Aromatherapy Diffuser – and I can smell so much yummy-ness as I write this because I’m running it right now – please take care of your unit so you can enjoy it for a long time to come.

My space in my efficiency apartment/flat (read: my living room is my bedroom) is at a premium, so generally speaking, I don’t have much room to spare for knick knacks. I decided the place that would best serve my needs would be the “window” between my kitchen area and living room/bedroom – mostly because it’s also where one of my two electrical outlets in the entire apartment is located. No joke. I’m almost afraid to run my microwave and my TV at the same time.

I plugged this in and turned the knob on, and immediately it started glowing. What happens is the scented oil circulates within the glass globe, and there is a small opening at the top of the second piece that is seated on the larger piece that you remove when you are adding your oil, so the scent travels out of that small opening but is not overwhelming. Because the oil churns in the larger glass portion it sometimes looks like a fountain inside and is quite calming to watch, like looking out a window on a rainy day. The super, duper cool part of this diffuser is that there is a part that lights up in the center and changes color from green to orange to red to blue and then back to green again. You can see in these pictures what I’m talking about. (Excuse the pose-able figurines, they’re just waiting for their next assignment.)


Something else that’s great is that there is zero noise with these units. The changing colors and no noise factors could make them great for a meditation room or a baby’s nursery or child’s room – just make sure they are kept far enough away from little hands so they can’t be pulled down.

Organic Aromas thoughtfully provided a bottle of their own blend of essential oils so that out of the box, the diffuser could be used right away. However, I always run into this problem: I am deathly allergic to lavender. Even typing that word made me itch. I opened the bottle and took a whiff and it smelled nice enough, but I knew I couldn’t take 2 hours daily of an induced asthma attack. I keep my own organic essential oils on hand to make room and fabric sprays, so I placed peppermint and tangerine oils in my diffuser. Man, my place smells so good! Gone are the stink of my one neighbor’s day-old Dinty Moore stew in the garbage, or my other neighbor’s 20-year-old cat who hasn’t made it to the litter box in at least 5 years.

There is an automatic safety feature on this unit in that it will turn itself off after two hours of continuous running.

I think I found my new little happy place, and it is about 5″ wide by 9″ high and smells like heaven.
Raindrop Diffuser Organic Aromas

Hit Me Baby One More Time

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.
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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.

I’m Bad, Like Michael Jackson

This afternoon I went to a dentist appointment that I knew would be stressful, physically. The plan was that we would be “seating” my two crowns on the bottom left. Last week one of the temps fell off and I was told by the receptionist that even though I was in pain from the exposed bone/nerve that I had to wait until my appointment today because they had no time to see me. There was also a hole in the other temp that managed to stay on but obviously did not do a lick of good for the entire 26 days of its existence.

So when I sat down, the dentist and assistant said, “So how about we also get to the catastrophic crack on the right too?” That meant that my entire bottom jaw had to be numbed. The dentist started putting the numbing gel on the back left corner, but we both knew it was just for show. He was in a hurry and soon he was bracing his body to go for the stubborn juncture between my upper and lower jaw; I saw the trace of satisfaction on his face when I moaned, the tendon in my jaw yielded and the needle felt as if it went all the way through to my ear. After doing about a dozen injections along the inner and outer borders of my gum line on the left, he attacked the right, and decided he didn’t want to slow down to make me the least bit comfortable with numbing gel. This time I had tears running out of the corners of my eyes while the assistant shouted that I was doing great. Not a few times I thought to myself that this is either the office that they send patients who are super duper tough, or they send patients who they don’t give a damn about beating up.

Still, it’s important to keep your sense of humor as a patient, or so I think to myself. This is my reasoning every time when I am preparing to be pummeled by a member of the healthcare community. I always think that if I can somehow appeal to their humanity that they will see me not as a number or as cattle, but as a human with feelings and needs.

While we sat and waited for me to lose my ability to speak, some Michael Jackson came over the sound system. Just as the dentist came back in the room, we were practicing our “hee hee”‘s.

So that was our running joke until it was time to get serious about getting the temps off and the permanent crowns on. They didn’t numb me enough. I got a few more pokes. So he set off on the right side to take down the tooth with the catastrophic crack. I had warned him that I was not optimistic because I hadn’t been able to chew on that side of my face at all; the cracked portion would shift and cause me crazy pain. He was still hopeful.

While he was working on me, sometimes he would bark orders at me – “Left! Right!” More often than not, he would use the small mirror that he had hooked in the right side of my mouth to move my head around. I could feel my wig getting matted at the back of my head – not exactly ideal, since this piece costs $370, far from cheap, and once the fibers are ruined, there’s no going back. As the minutes dragged on and the dentist maneuvered my lips and tongue so that he could get at my tooth from all the best angles, even in my numbed state I could feel the corner of my mouth splitting. Out of impatience and frustration the dentist hooked two fingers under my top right lip and stretched it as far as it would go, and kept grinding my tooth down to a nub. Tears slipped out of the corner of my eye again. My fingers tensed; I focused on relaxing them, but after a few minutes, I would realize that they were back to being claws and my forearms were becoming sore.

Finally they were done with that tooth. I can’t remember how many songs passed, but we just happened to end at another Michael Jackson song. They took a mold of the right bite so I could get my temporary crown, and finished just in time for me to say with Michael, “You know I’m bad. Sha-mone.” That cracked them up again. They asked if that was really what he said, and I asked them if they had a better explanation.

By the time they were ready to put on the permanent crowns on the left, some of the Novocaine had worn off, so I had to get more shots. More cheerleading from the assistant. I swear that my nine lumbar punctures have been easier than this trip. More stretching of my mouth, pulling my face left and right as if I am a horse being led by a bridle and bit. Barking at me to open my mouth wider when all I want to do is close it to take away the deep ache.

Finally, finally, after 2.5 hours, I escaped the chair and we talked about the next appointment, which is on Friday. I’ll have to be numbed again but it shouldn’t be as traumatic or long.

WWMJD (What Would Michael Jackson Do)? Sadly, my plan to appear more than just a mouth full of broken teeth failed. I’m not giving up my sense of humor. It’s as much for me as it is for them.

Of Saints and Sinners

I don’t drink, I don’t smoke, I don’t use drugs (not even the widely accepted green stuff); however, if I could snort chocolate, I probably would. In fact, I’ve heard that the latest craze is snorting unsweetened cocoa. Yes, it’s a thing. But what I’m referring to is more like my love of M&M’s – relatively harmless in the grand scheme of things.

Last year when 23 & Me was still mired in legalities regarding providing medical results in their gene testing, I had my genes tested because I knew eventually they would either 1) be able to find a way to package the results about the health stuff in a way where it would be understood that it was not actual advice, or 2) we would have raw data forever but it would be a starting point for me to take back to my doctors. So I got in on the action while the price was reduced. Just two months after that, they were able to legally follow the fore-mentioned #1 and also increase their price, but my info was grandfathered in, so it was a great situation for me personally.

This testing confirmed I had the addiction gene. Specifically, the results indicated that I would gain no benefit from developing a drinking habit. (Really, who does?) But certain people are definitely more vulnerable to addiction than others. I know I have that bug. Every once in a while I feel it tugging at my corners; in my 20s I had built up a tolerance to alcohol and it would take a dozen hard liquor drinks for me to perceive a feeling a drunkenness. What else could I become addicted to? Being pursued by men. Lipstick. Perfumes from Black Phoenix Alchemy Lab. I’ve managed to curb all of these, either cutting them out completely or limiting them severely. I know their price, either in dollars or with the price of my soul.

I’m bringing up addiction because it has claimed my relationship with The Saint Paul. Addiction brings with it deception, half-truths and deliberate omissions. I’m not inclined to list what his addictions are, but I discovered one of the five on our first date. I warned him early on that if I felt it interfere with our relationship in any way, it would not matter if we were 10 weeks or 10 years in, I would not hesitate to say goodbye.

As our relationship progressed, he tried to push the boundaries of my limits with what I would accept. One weekend I chose to ignore it because I was struggling so much with pain and unhelpful doctors that I needed comfort more than I needed to enforce respect. Later, other addictions became apparent. I started actively watching for evasiveness, because I realized that this was his go-to tactic when he felt cornered. I also completely lost trust in his ability to be my partner; his actions did not match his proclamations to support me, because in reality he always waited for me to take the lead and take care of everything.

This past week we did not spend time together. I rested a lot because the week before we were together every day because of non-stop activities, and then I wrapped up the week by spending time with some long-term friends. I had traded texts with him and asked him what he had done with his time and received no answer. I took this to be a deliberate, cowardly omission, a way to avoid telling me what he had been up to because he knew I wouldn’t like it.

I did not pry or send repeated messages. Instead, I went to the stash of brown bags with handles under my sink and began assembling his belongings from my apartment.

Tonight he confirmed my suspicions – he didn’t answer my question because he was doing something this weekend that he knew I wouldn’t like and broke his vow to me. It was just a formality that I asked him if that was the case. I had already mourned the loss of our relationship Saturday when I was met with radio silence. It was actually the sound of the other shoe dropping.

I encouraged him to seek counseling. I told him that I did not want to be “friends.” It would be far too painful for me to be the asshole handing out the advice that won’t be listened to, even if my advice is sought out and makes sense. I can only hope that his fear doesn’t paralyze him and that he pursues a better life by letting go of his demons.

Silence.

A good friend whom I have known for ten years now, whose portrait is one of only a few that actually hangs in my flat, asks every time we are on the phone if I am “better.” I pause every time because I don’t know why she keeps asking me. Her dad has diabetes, yet she never asks him after he goes to bed one night and wakes up the next morning if he is “better” and “cured.” She’s flying into my city next week to walk in her graduation ceremony for her doctorate degree and I will have to insist, once and for all, that she stop asking me that insane question and really see for herself. Sorry, not sorry. Read the following from my fellow blogger.
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Down on the Farm

I have had so much fun being exposed to so many products as part of the Chronic Illness Bloggers network and I’ve been able to give my honest opinion, including this one for the Fay Farm Rejuvenation Lotion. Please note that I received it as a gift and the opinions that I state about this product are my own and are in no way influenced by the company.

First, I’m a good candidate for this product because boy, have I got issues. I’m hanging out in bed for about 20-22 hours every day because when I’m upright, CSF tends to pool around my brain stem, and the pressure is mighty uncomfortable. However, laying in bed for so long comes with its own problems. My fibromyalgia is singing the blues – especially now that in the state of Minnesota and while the sweet corn is growing like crazy, humidity is at its worst (check out this scientific discovery regarding how corn is actually adding to our humidity in this state here).

For about three years I also laid on my left shoulder because all of my shunt surgeries were done medially and on the right side, so my left shoulder has a pretty nasty impingement that hasn’t cleared up with 6 months of physical therapy for the third time. At this point I’m up for trying just about anything to feel better, including sacrificing a chicken and dancing around a fire.

So I’ve got pain all over, and I’ve got this crazy pain in my left shoulder. I’m always looking for ways to take away the pain. The Fay Farm Rejuvenation CBD Lotion is formulated specifically to relieve joint and muscle pain because it contains 200 mg of CBD (cannabidiol) – a product of hemp. I’m not going to get deep into the MJ/hemp debate; however, I’m going to say that I was a legal, card-carrying medical marijuana user while I was a patient in Arizona and my doctors were completely stumped about my horrible allergy to my shunt materials. I went the route of medical marijuana to try to control some of the pain and I learned about CBDs and how they are extracted from hemp plants at certain temperatures much different from THC, and also are not “psychoactive” like THC. In other words, CBDs are pain killers but they are not going to make you high.

Here’s what the lovely bottle of The Fay Farm Rejuvenation Lotion looks like (and you can tell I’ve used it):
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Here’s what it looks like straight out of the bottle, it has a slight green hue:
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Fay Farm recommends that this lotion be used for any body parts where fast absorption is desired. I agree! This is a lotion that is non-greasy and absorbs quickly; the base includes hemp oil, apricot oil, grape seed oil, apricot kernel oil, white sesame oil and jojoba oil, and you would think that with the combination of all of those oils that it would be, well, oily, but it’s not. When I apply a dime-sized squirt to my bad shoulder, it only takes about five circles before it’s absorbed.

It’s not just my shoulder that needs attention. Sometimes the tendons at the outside of my knees become tender. Don’t ask me why – I have a lot of theories but I’m sure I’ll never know the real reason. But I’ve been putting some of the Rejuvenation Lotion there too. And of course if I’ve had to do a lot of walking and standing because of physical therapy, I’ll put the lotion on my feet when I get home. Every once in a while I’ll put the lotion on the tendons that lead to the base of my skull (pretty easy for me to do since I am completely bald – no hair to contend with).

The company has described the scent as a decadent vanilla with a hint of camphor. I’m pretty sensitive to scent, and honestly, I don’t know if I would describe it that way. To me, it smells more “green” than anything and I don’t smell vanilla at all. In any case, it’s not a strong scent and should not overwhelm any of its wearers. Also, this lotion should not replace a good ol’ moisturizing lotion – keep using that chemical-free daily moisturizing lotion (trust me, look up ingredients and products on the Environmental Working Group database: Skin Deep) and get smarter about what you are putting in/on your body.

How effective is it? I would describe this lotion as being gentle and subtle. In other words, the relief I felt was not sudden and shocking; it was more like, “Oh, that part isn’t hurting right now.” It seemed like the effects lasted for about two-three hours. Because I got relief from it, I have continued to use it. It’s that simple. The chickens are safe for now.

Feel free to check out all of their products through their website: http://thefayfarm.com

If you are interested in this product in particular, you can visit this page directly; The Fay Farm is allowing a 10% discount for my blog readers as well as free shipping with the discount code DATINGSICK.

Dear Mr. President

I figure I have nothing to lose.

It will be a few months until all of my dental work is completed. I am pretty sure that the one tooth that has a “catastrophic” crack is going to be a complete loss, and I’m going to have to spring for an implant (or a partial plate/denture). I’m not allowed to have pain pills – not because I’m not suffering, because clearly I am, but because the FDA and the CDC has decided it’s a good idea to regulate me, rather than try to treat addicts. So I’m stuck eating scrambled eggs and applesauce and rice because I’ve cracked all of my teeth because I’m in pain.
The NIH/Vanderbilt has turned me away with a final diagnosis that is a complete misdiagnosis, so now I’m down to a PCP who will only write me prescriptions for my cholesterol meds. I might have the mast cell disease doctor, I might not. That’s up for debate.

So I wrote a letter to the President.

That’s right. Not that I expect Barry, a single digit midget with only months left in office, to be able to do much about it, but overall, I think those of us who are applying for or who have received disability really get the short end of the stick every time. Here’s what I asked for:

1) Common sense from the people who determine disability. I cannot believe how many times I have heard directly from people who say they have been turned down for disability because they have been paralyzed. One person was a paraplegic and their only way to ambulate was to blow into a straw on their customized wheelchair. THAT PERSON WAS TURNED DOWN FOR DISABILITY. Unless the SSA can prove that the vast majority of the U.S. population ambulates by blowing into a straw on their customized wheelchairs, I think this person should be considered disabled. Likewise, if I have to lay for 20-22 hours a day to keep the pressure off of my brain, common sense should tell my determiner that I am disabled, unless the majority of the U.S. population travels to work on a bed. THEY DON’T. Yet here I am, being told that there’s no way anything is wrong with me. By the way, it’s not just my physical limitations that determine my disability (silly me for thinking that); it’s my age and education too, and since I’m college-educated, there’s a higher chance of me finding some job to support myself – more so than someone with just a high school education, even if it’s a physical labor job that requires only a high school diploma. One guy was told that he can fold napkins, so he was denied disability. If anyone knows of a job where the only duty is to fold napkins and you can pay all your bills and eat too, hey, let me know, I will fold the shit out of those napkins…from my bed.

2. The time to process a disability case is appalling. I was told it “wasn’t unreasonable” to have to wait two years to be assigned a hearing to determine disability. If I can’t work and I don’t have any source of money coming in to pay for basic needs like rent and groceries, how is this reasonable? Not everyone has relatives that they can live with.

3. Accountability. I told President Obama that it’s incredible to me that I have to resort to writing to him or to daytime talk shows or to local TV stations with the hope that someone will find my story interesting enough to want to “rescue” me. But what about the thousands of people like me who don’t get that chance? Why should only one person win the lottery? Why are only some people worth the money and effort?

In closing, I acknowledged that my letter could be completely pointless if Trump is the President Elect. We all know how he hates disabled people…and people of color…and women…and poor people…and foreign people except for his wives (that he later cheated on)…

The Tiers of Privilege

Minneapolis and St. Paul feel like very different cities from when I moved away 20 years ago. There was a palpable difference between Minneapolis and Albuquerque; in Minneapolis in 1995, my neighbors were white, black and Hmong (thanks to new policies welcoming large numbers of Hmong refugees from Thailand, Laos and Vietnam seeking a better and safer life), and in Albuquerque, the population was largely white, Hispanic and Native American. I felt as if I had moved to a different continent. The way that people interacted is something I can’t easily describe, except that I learned the “manana” (“tomorrow”) concept from my co-workers the hard way, and was told by employers that I would always be valued because I was a Midwesterner and therefore more “uptight and on time.” The population in Phoenix now closely resembles Albuquerque from 1995 – again, the residents are largely white, Hispanic and Native American. Because the southwest didn’t shift in any obvious way, I didn’t expect the Midwest to either.

When I moved back to the Twin Cities, I was not prepared for the greater diversity in the population, but my traveler’s heart is quite excited by it. A lot of the cab drivers I have had for my medical transportation have immigrated from Somalia, some arriving the same year I left Minnesota, telling me stories about how they excitedly called their relatives back home to tell them that powdered ice was falling from the sky (snow), and their relatives always asked the same question: “For free????” There are also now large Hispanic communities settled especially around the cities where living wages might be available. All of these groups are bringing their wonderful musicianship and dancing and food and willingness to endure countless hardships as strangers in a strange land because they know that turning back is not an option.

Why am I talking about all of this anyway? Well, the U.S. has always been a country of  tiered privilege. The caste system does not only live in India, my friends; it’s alive and well, even here in Minneapolis/St. Paul, where we pride ourselves on this appearance of being so tolerant but then have something so stupid/needless/heartbreaking/violating/sickening as the shooting of Philado Castile happen. But it’s not just race that determines where you land in the land of privilege – there’s a lot of “ands” that are the deciding factors.

Let’s start at the top. Your average white dude is the ultimate king of the food chain, born with the silver spoon in the mouth. Guys, you just are. If shitty things happen to you, the system isn’t against you in “pulling yourself up by your bootstraps.” You might want to feel sorry for yourselves, you might want to stomp and cry and try to convince us that you are being picked on and we should feel sorry for you, but I can’t. I can’t.

We can take it down a notch and look at white men who are physically handicapped by a chronic illness. Men are believed faster/more often than women when it comes to pain. Why? Medical sexism. On the tiers of privilege, white men who are in some way physically deemed “less valuable” by society are on a lower tier than ordinary white men.

I’m pretty sure my place is on the next tier down from that. I’m a white woman.

But wait: knock me down a few more rungs, because I’m a white woman who is also physically disabled. Since I’m a woman and I’m physically disabled, I have absolutely no value whatsoever, a “non-person,” specifically. My cane and paralyzed face make me invisible to nearly everyone (and if you don’t believe me, you should walk through a store or down a sidewalk with oncoming foot traffic with me).

But yet…where do all of our friends and neighbors of color fit in?

My Filipino ex-boyfriend was educated and articulate (except when it came to actually being in a relationship – but that’s another story); his status as a man was relatively high, but as a man of color he ranked lower. Unfortunately he suffered from bipolar disorder, so that could be seen as a detriment, but then again, he was believed – his gender saved him from medical sexism. He always claimed that strangers looked at us distastefully when we were out in public. I think he is valued much more than I am, even though he would deny it.

My most recent Native American boyfriend had a much harder upbringing. He grew up on the largest reservation in the U.S., the Navajo reservation on the New Mexico side. Poverty, crime and mental illness brought him into adulthood. He left the rez to get an education, but for one reason or another, he has clung to the the things that have only brought pain and destruction to his life. Where does he fit into this world?

And then there are the women of color who earn even less than the men, who are physically and sexually assaulted, are obviously valued less when they are forced to remain silent in the company of men or to walk a few steps behind them. Add an “and” to them – a physical disability – and really, how much lower can one go in terms of value as far as society is concerned? I startled a Somalian woman in a waiting area once; I carry cough drops and I noticed she was having a coughing fit, so I offered her one. Her interpreter arrived a few minutes after that and she was called back for her appointment, but she made it a point to tell her interpreter to thank me in English. I did not consider it an insult that she did not know how to say it herself when she was on her own, but since I know how the public at large acts more often than not, I could just imagine that even that simple interaction added stress to her afternoon. Like me, she walked with a cane. I wondered how she was treated by her peers and family.

I am always disappointed when I see/hear someone say, “Why don’t they just ____”? as if we are simple creatures and there’s a one-size-fits-all answer. There isn’t. (That’s why they should stop just conducting medical studies on middle-aged white men if they want real-world results. I mean, hey, we finally figured out that heart attacks are worlds apart between men and women!) The most important thing to understand is that just because things look a certain way from where you’re sitting doesn’t mean that everyone else feels the same way. If you can’t see past yourself, then your world is very small indeed.

Amateur Hour: How Vanderbilt/NIH Undiagnosed Diseases Network Failed Me

Earlier this year, I worked for four hours sorting and copying approximately 350 pages of medical records to send to Vanderbilt University in Tennessee when the coordinator for the NIH Undiagnosed Diseases Network notified me that my case was being sent there for review. I divided everything by year and specialty. I inserted notes and highlighted everything that should be of special interest.

I took it as a bad sign when I received an email that was poorly written, and rightly so:
I need you help with some missing records the UDN has requested on you. We are missing the records from the Movement Disorder Neurologist and  also labs associated with Thyroiditis Workup are not complete. Please request these records be faxed directly to us at *********** or **********. We cannot move forward with reviewing your case until we have these records. Please feel free to contact us if you have any questions.” They weren’t actually missing the records from the movement disorders neurologist; the EMG results were included in what I forwarded to them. (Special note: capitalizing random words is an elementary mistake in and of itself and certainly doesn’t belong in official correspondence.) I wrote back and asked what needed to be obtained for the thyroid workup because I was going in for an appointment in the near future and could have tests ordered. However, I didn’t hear a response for weeks. Their suggestion to contact them with questions was not sincere because they didn’t respond to repeated calls or emails for three weeks total. I went to my appointment and guessed what they would want ordered, then forwarded them the results.

It didn’t matter, though. Last Thursday July 14th I received a letter in the mail from the head of the team saying that after a “stringent” review of my case, they were turning me down. They decided that because I have a strong history of autoimmune diseases that I must consider myasthenia gravis.

Here’s the problem, though: I considered myasthenia gravis already back in 2010, and again this year, and it has been ruled out by tests including the painful tasing of my face in April. All of those notes and tests were included in my paperwork. The 53 doctors who have seen me so far have positively said that I don’t have that. I also say I don’t have that. I have not found any documented cases where patients have received a working brain shunt to move CSF to relieve the symptoms of MG. I have hundreds of pages documenting my numerous symptoms and surgeries, and instead the Vanderbilt team chose to tell me to go back to the U of MN doctors (who, by the way, told me to go away and not come back) to get treatment for MG because “they would know how to treat me.” I am not allowed to appeal this decision or have any other team look at my file. The UDN door is forever closed to me now.

The next two paragraphs I’d like to address to that team directly:

Fuck you, Vanderbilt, you backwoods amateur cocksuckers.

This is what I don’t have: myasthenia gravis, lupus, MS, normal pressure hydrocephalus, communicating hydrocephalus, Creutzfeld-Jakob, IgG4 proliferation, scleroderma, pseudotumor cerebri, diabetes, secondary tremors, tumor, chiari malformation, or rheumatoid arthritis, among other things. After seeing so many doctors and going through hell and having to research A LOT on my own, Vanderbilt, your suggestion makes me think that my file landed in the hands of a beginner’s group. I’m way ahead of you, by years, and I didn’t even finish my medical degree. Every single one of you needs to go back to studying onion skin cells under your 10x microscopes because you obviously can’t handle the hard stuff.

As I feared, Vanderbilt chose to give much weight to the three doctors in the circle jerk at the U of MN claiming I had some sort of “facial weakness” that would imply MG and completely ignores the issue with the cerebral spinal fluid, which in turn ignores the vertigo, fatigue, slurred speech, numbness, and cognitive problems. It would also imply that I implanted a shunt for the fun of it – because I want something that I’m allergic to that causes a shit ton of pain in my body. It also means that they completely ignored the notes that indicated that my symptoms subsided when I had working shunts. Now I am back to the starting point, meaning no one knows what I have or how to help me. (Please note: I am still going through testing for the mast cell activation syndrome and I am watching the results slowly trickle in; my guess is that I’m going to have to repeat everything because nothing is extraordinary in the outcomes at this point.)

I also still don’t have disability money coming in. My hearing won’t be set until about a year from now, but my chances are only about 10% in my favor at the moment because I still can’t get a diagnosis or the NIH to work with me. I’m not being dramatic, I’m being realistic. My attorney would tell everyone the same thing.

If you have read this post in its entirety, thank you. I’m not asking for advice; that’s not how I operate. This is just one of those times where the Carousel of Crap feels extra shitty.

The Princess and the Pee

There were three things rolling around in my “Personal Belongings” plastic drawstring bag – one “hat” that is used to measure output, and two tall brown jugs with screw-on lids and my name on them. It was time to collect my pee.

The jugs were about 4.5 inches wide and 4.5 inches deep but a whopping 12 inches tall, which meant that in order to fit in my half sized refrigerator, a shelf had to come out. I made sure that I set everything up on an empty bladder so I didn’t have to scramble to do it later. I rearranged my fridge and put the jugs on the top shelf so that they would already be cold, ready for the first deposit. I very loosely screwed the caps on. I got the box of green latex gloves out of my medical supplies and sat them next to the toilet; I was not going to be transporting the collected goodies with my bare hands. I put the “hat” under the seat.

Luckily The Saint Paul had a good sense of humor about the whole situation too. He was on cooler duty for me; I sent him a picture of the one I thought would fit the jugs and he picked it up on the way to my apartment after work. However, when we tried to fit the jugs, they were just about 3/4″ too big, so I had to send him back out for a bigger cooler (that I could still carry by myself while also using a cane). I thought I would only have room in my freezer for a 5-pound bag of ice and so that is what he came back with for me.

Bright and early the next morning I started drinking water.

As luck would have it, I had plans to see someone that evening whom I hadn’t seen in at least 13 years who just happened to be in the city because of a work obligation. When you get an opportunity, you do everything you can to take advantage of it! This friend was going to be only blocks from my now deceased dad’s and uncle’s hair salon (still owned by their good friend), so I thought, “Hell, I’m going to get some wigs cut too.” I managed to get a short bus for 3:45 pm to take me to the salon, and to pick me up and take me home at 10 pm, so that meant that I could only pee from 7 am to 3:40 pm, and about 10:30 pm to 6:45 the next morning. It’s a good thing I’m a planner. It’s also a good thing I have the bladder of steel. I told my friend I’d see her at a certain time and that I couldn’t pee while we were out (without offering an explanation).

I did pretty well. I took in about 80 ounces of water between 7 am and 2 pm, and managed to get a bunch of samples before my bus rolled up at 3:45. However, I did hit a few snags. First, the “hat” didn’t sit well under the seat – I almost completely lost the biggest collection and I had to jump up midstream and pull half of the container up from out of the toilet. It wasn’t dunked in the toilet water but I did manage to get both hands wet, and was so grossed out that I had to do a surgeon’s scrub before I could finish peeing, but I had to do it really quickly because I hadn’t been able to wipe my booty so I had to kind of stand bow-legged and squat like a cowgirl who had been riding the trail for days so my legs didn’t also get drenched (thank goodness for the bidet). Second, the “hat” didn’t have a very big pour spout, so when I went to the fridge to transfer my drop to the jug, I had to pour very, very slowly. I had a lot of time to contemplate my urine. I remember thinking, “Man, that smells really fruity. Why does it smell really fruity? I’m not even borderline diabetic.”

Another thought: “There are some FetLife men who would mourn the loss of this tasty liquid.” Another thought: “Replace ‘tasty’ with ‘nasty.'”

I managed to not use the bathroom once between 3:45 pm and 10:30 pm, so no samples were sacrificed in the name of reconnecting with old friends. Everything went into those jugs.

I only ended up filling up one of the jugs with my samples, and my special instructions were to bring the sample packed in a bag of ice packed in a container of ice to the hospital. However, since this cooler was much, much bigger than the one that was only slightly too small, I had to improvise when I realized the ice only reached the bottom 2 inches of the cooler when it spread out. I knew I only had minutes before the cab showed up to transport me to the hospital, so I started grabbing the nearest things – throw pillows from my couch to fill the large spaces. I stuffed those around the pee jug in a bag, then poured the ice in. There was still space not covered in ice. What to do? I had an old bag of nearly petrified cut rhubarb in the freezer that I thought was going to be used for custard bars (seriously, make these rhubarb custard bars), so that was thrown on top. Perfect.

I got to the M Health building at the U of MN hobbling with my cane in my right hand and this cooler big enough to fit a small man on my left (bad) shoulder and slowly made my way to the lab. When I got to the front desk, I notified the clerk that I had a temperature-sensitive sample, so she asked me to follow her to the back area with the phlebotomists so they could accept it and log it. The woman who ultimately took it was flustered and momentarily angry when she saw my throw pillows – she assumed that I had forgotten the ice part. I grabbed the rhubarb off of the top and threw it in the trash and she took the cooler to the back to pass it along to the technicians.

While I was waiting for my cooler to reappear, the clerk and I realized that another cooler that was sitting there was leaking water all over the floor. She opened it and it contained another pee jug. I was surprised to see it laying sideways completely submerged in water – I guess they had complete confidence that the screw top was a tight seal and there would be no transference either in or out? Either way, the clerk and I started working on mopping the floor up with paper towels. Of course, I did another surgeon’s scrub at the sink immediately afterward. If I’m not okay with getting my pee all over my hands, I’m not crazy about Stranger Danger’s either.

There is a distinct possibility that I will have to repeat this test a few more times. If so, I will be more prepared – more ice, less rhubarb!