Netflix

Innovation and “The Bleeding Edge”

Posted on by akiwifreund

There’s a documentary that’s been added to the Netflix library that I think everyone should watch called “The Bleeding Edge.” Overall, the topic is supposed to be about medical devices. But talk about intersectionality! Unfortunately, I think that women are going to be drawn to this movie more than men – because we are experimented on and dismissed much more than men and the movie makes it much more evident.

Every once in a while, we get to see a little snippet of a CEO standing on a stage proclaiming the audience of marketers and/or health care professionals “innovators” or “disruptors.” I really struggle with these labels. I see them thrown around often. What do they mean, exactly?

Nothing has really changed drastically here in the U.S. with the delivery of healthcare. We are still beholden to insurance in the traditional sense, and pharmaceutical companies, hospitals and medical device companies drive pricing, which is all over the place; nothing is uniform. Right now, only those with expendable income can stray from the model. Delving a little deeper, not every state is set up for people who are at or slightly above poverty; instead, the state laws are designed to punish them for lack of income and lack of healthcare, while simultaneously penalizing them for not taking better care of their health.

“The Bleeding Edge” covers such medical implants as hip replacement systems and the Essure coils, which are discussed in detail. I can relate to this topic on a few levels. First, all ten of the shunts that I had implanted between July 2011 and May 2015 failed. I went to a hydrocephalus conference in 2016 and was able to attend a panel with all of the major device manufacturers, and got the mic for a question. I detailed issues with scar tissue growing into the programmable part of the shunt which made the dial get stuck wide open, causing excruciating pain (and if any of you reading this have had a leak, imagine the symptoms for a year where you feel like you are being beaten by a tire iron every time you raise your head). The manufacturers insisted this was “impossible.” I told them they couldn’t say that to my face, because I was living proof, and one of their reps was in the exam room with me to witness it.

Any time, and I mean any time a device company says something isn’t possible right out of the gate, you know something is up. As outlined in “The Bleeding Edge,” women who had Essure implanted were only reported on for the first 12 months – and even for those women, their answers were altered so the outcomes were positive. As far as my shunts go, I didn’t know before my first surgery that all shunts have a 40% failure rate within the first year. I still haven’t seen that published anywhere. I wouldn’t have known that if I hadn’t attended the bi-yearly hydrocephalus conference in 2016 and heard it from one researcher (and only one researcher).

My second connection is that I actually seriously considered the Essure implant. A friend had them implanted in her Fallopian tubes and seemed to suffer few side effects. I wanted to stop taking birth control pills but didn’t want other hormones, and thought maybe the coils would be a viable permanent solution. I actually developed tumors in my uterus and had to have a hysterectomy, otherwise I may have completed that process. I’m breathing a sigh of relief that I didn’t after seeing this film. I didn’t realize the scope and breadth of complications – but more importantly, now that I know I overproduce scar tissue internally because of MCAS, I could have been in terrible trouble (besides what is happening now). I don’t know what I would do if I had to deal with that in addition to the scar tissue I already have growing around my intestines.

Another alarming process pointed out in the film is that devices are grandfathered in simply because they are similar to other devices that have been created. It doesn’t matter if the previous devices were defective. It only matters that the devices existed.

There are many moments in the film that made my blood pressure go up immediately. For instance, some fat ass doctor watching protesters who received the Essure implants say that they made up their complications. He is misogyny personified. And when a rep whose identity is disguised tells a story about a doctor who admits that the rep’s product is superior but he doesn’t get enough financial incentives so he’s going to promote a competitor’s product, I’m tempted to throat punch someone. Or how about when the filmmakers point out the different companies the former heads of FDA went to work for after they were done in the public sector so they could help get the products passed through the FDA for bigger profits with no thought to safety or effectiveness?

What would true innovation or disruption be? Let’s disrupt misogyny. Let’s disrupt hiring from the public sector into the private sector and vice versa so we can eliminate cronyism and sole emphasis on huge profit margins and replace those with successful medical devices and prescriptions. Let’s build a truthful healthcare system and test products before they are put into our bodies. (Don’t say it can’t be done. Other countries already do it.) Let’s build a healthcare system that is not based on employment or lack of employment. Let’s call it something other than “innovation” and “disruption.”

The Best Little Gift Guide

Posted on by akiwifreund

I used to pride myself on being able to find little things – and big things – that seemed like a perfect fit as gifts. I would look or listen for clues. Okay, maybe sometimes I wouldn’t get it quite right, but at least I would try. My shopping would take place over the course of the entire year and during festivals and trips, because you never know when you will stumble on something unique that screams “_____!” (Use your imagination.)

But times are different. It seems like the majority of the people I know are much more careful about how and where they spend their money because of various constraints or social awareness. I have to be careful too; I no longer have an income, so no extra money to spend during the holidays. This list that I’m going to lay out is for someone – like me – who has little or no income, who might not be able to buy much of anything anymore.

1. Time. This is a big one, and it’s free! I simply can’t get out and socialize like I used to, because my body has put a hard stop on that. Sometimes I don’t want to be by myself. I love it when people visit or call, but I don’t always initiate stuff like that because I don’t want to be a burden. There’s nothing worse than a whiny-ass friend constantly saying “Pay attention to me,” right?

2. Gift cards. Conventional manners/wisdom say that giving gift cards is tacky because then people will know how much you spent on them, yadda yadda yadda. Bullshit. I love gift cards. I especially love them when my entire monthly budget has gone to rent/utility/medications and I have nothing left over to buy groceries, and I have a lovely gift card to the rescue.

3. Wheels. Man, I miss driving. I miss those Saturday mornings when I would get up at 8 am and run around until 11 am and go to about 8 different places and get all of my shit done. Now I ride the short bus and I can only go one place, and it takes me 2-3 hours. And it’s a drag. And I never know who’s going to be with me and if it’s going to be a bat out of hell drive. I would love it if I could have a whole morning of driving around for errands, like dropping off my recycled clothing/rags, recycled toner cartridges, disposing of hazardous waste, petting animals at the humane society, recycling old medications, getting 5 favorites from Trader Joe’s and 6 favorites from Hy-Vee and 4 organics from Aldi. As a side note, disabled people like to recycle too. It’s just that we can’t easily get to these locations and facilities. Plus, me getting out to do these things instead of doing them for me means I get to get out. (As a side note, I have discovered that more than a few people have assumed that the short bus is free. It’s not. It’s actually more expensive than the regular bus. Each round trip for me is nearly $10. It’s really, really expensive when you have no money coming in at all.)

4. Independence. My oldest sister made up a list of modified items that would have made her life easier, like rounded chopping knives that were easier to grip. We were puzzled at the time; it didn’t seem like fun, especially for Christmas. She had debilitating MS and was bedridden because she had lost the use of her legs and some of the finer motor skills of her fingers and hands. Looking back, and living what I am now, I understand that ignoring her list and insisting that we only get her “fun” stuff was a huge mistake. It is not only fun but a huge relief to get everything you ask for and need. So if someone asks for a modified chopping knife, get them the chopping knife.

5. Entertainment. I’m a movie/TV snob. I don’t like most sitcoms because there’s a lot of yelling involved. I also don’t watch cartoons. I know what I like, and I’m a binge watcher! I’m a loyal customer of Netflix, Hulu, and Amazon Plus. Yes, all three. They have some overlap, but there are some things that don’t appear on all three, and Hulu allows me to watch network shows that aired the night before. If you love me or someone like me who is in bed a lot, give the gift of streaming entertainment. I guarantee you it will be used. (Side note: I’ve tried reading. I used to be a voracious reader. Because of brain damage and eye problems, I don’t read much right now. Zero memory and attention span. Squirrel!!)
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6. Amazon. This deserves its own category. I have used Amazon for vitamins, durable medical equipment (that was not covered by my insurance), ingredients to make my own deodorant/antiperspirant, and tons of OTC medication like Benadryl and Pepcid, which I take megadoses of. Of course, I use Amazon Prime too, so I get the movies, and it comes automatically with the music service too. Another great thing is that if you purchase through Smile.Amazon.com and designate a charity to receive 0.5% of your total spent, you can automatically make donations. I don’t have money to donate to any causes, so it still makes me feel as if I’m making a contribution, even if I can’t hand anyone cash. So you will never go wrong with an Amazon gift card.

7. Skin. Disabled people like luxury stuff too. Not everyone wants to smell like an Avon or Dove whorehouse or litter box. A little company called Villainess was just purchased by a new owner and sold out within a few days of its new stock because everyone was so excited to dive back into its soaps, lotions and scrubs. I’m telling you, their stuff is sooooooooo yummy. I just got 3 of their jars of lotions. I’m going to wait to open the jars until I feel really poor because it should be used within 2 months of opening (less preservatives = better for your body) and I want to stretch them out. So keep an eye on them, and put in an order and make someone feel extra special.

Another great place with amazing combinations is Black Phoenix Alchemy Lab. I’ve had some bottles for 2-3 years because I have enough to rotate them around and not smell the same every day. You can buy samples (“Imps Ears“) instead of full bottles, but if you are sure you are going to like all of the flavors that they list, go ahead and buy a whole bottle. I have very rarely been disappointed. Buying scents for other people is a crap shoot, so be very cautious! I’m deathly allergic to lavender and patchouli. Anybody can be allergic to anything. If you aren’t sure, there are always gift certificates.

8. Pain control. I reviewed two different lotions in my blog, and I recommend them both: Mo’s Dream Cream and Invigorate. You can’t go wrong with either of them.

The Oska Pulse is a device that is a financial investment, to be sure, but it has a 30-day money back guarantee, and I use mine every day – because there isn’t a part on my body, somewhere, that isn’t hurting. Sometimes I end up using it six or seven times on that part. I’m just grateful to have it because I always end up feeling better. (It is important to note that it shouldn’t be used around any medical devices that are surgically implanted that could be affected by magnets, like shunts, stimulators or pacemakers. My shunt is strictly all silicone because I’m allergic to nickel.)

9. Massage. I go to a massage therapist once a month. There have been a couple of times where I have second-guessed myself and the wisdom of going, especially when I’ve had to shell out extra for medications and money is getting low, but when I’m on the table and getting worked on, I know I need it. First, it’s hard on my body to be in bed so much. Second, I rarely ever have any physical contact with anyone else. The massage is it.

10. Activism. I can’t do all of the work. Literally, I can’t do all of the work. The best gift you can give people that you don’t even know personally is to tell your elected officials that disabled people need housing, healthcare, transportation and good nutrition. I’m still waiting for housing that I was promised 8 months ago; it would mean that I would have things like grab bars, instead of constantly falling in the shower, and affordable rent, instead of paying full price on zero income (still no disability income after nearly 3 years of filing). Do not buy into this idea that everyone who is disabled should be punished.

Honorable Mention:
Check out The Unchargeables for a variety of chronic/invisible/rare diseases for gear – you can even look for items according to the disease! I checked my alphabetized list and they have a few of mine in there. Pretty impressive! And for each disease, there’s a bunch of items, so you’re not limited to just a t-shirt or bracelet.

A Slap And A Poke

Posted on by akiwifreund

It’s crazy being me. I say this so many times. I had mentioned the rare disease in my regular every other Tuesday get-together (most everyone has heard about it at some point), and a new guy had it in his head that he was going to school me on how he was going to cure me with diet and a holistic doc. He had the usual probiotic and chelation recommendations but also insisted I should eat sauerkraut. He couldn’t believe that said sauerkraut would instantly release histamines and give me hives. He also couldn’t believe that the Mayo would turn me down. I told him that I don’t ask for advice because I am always 1-7 years ahead of anything anyone can ever tell me, and I’ve never met anyone with my particular neurological symptoms with the mast cell disease.

<sigh>

On Monday, I was supposed to get a high volume lumbar puncture. That was the way it was ordered. This meant that the opening pressure was supposed to be read AND fluid was supposed to be taken off. When I was in the fluoroscopy room, I asked the radiologists and staff if they could carefully document everything before and after because my symptoms would change. They then offered to have a physical therapist evaluate me. I said great, yes, no one has ever offered that to me so I didn’t know it was an option. So they called the doctor to see if he would change the order.

However, when they got the doc on the phone, he changed the order and said forget it, only get the pressure reading and don’t take any fluid off at all. I was floored. First he wanted at least four vials (which is a lot), and then he wanted nothing?? I said that even if the opening pressure was normal, if they took some off, they would still see an improvement in my symptoms for a few hours. The doc said no way. Do not take any fluid off.

The radiologist hung up with him. He told me that he couldn’t go against this new directive and I had two choices: go ahead and get the pressure reading only, or stop everything and come back some other time. But here’s the thing: I only got this lumbar puncture because I called this neurosurgeon that I saw two years ago and begged for it, because I haven’t had my pressure checked since then. My current neurologist has been telling me I’m overdraining (even though no one has checked me) and I’ve been saying that the pressure in my head is high when I’m upright, and I felt like getting this check would help settle the fight. But the neurosurgeon wouldn’t agree to see me in the office. This was all I was going to get. So I went ahead.

I don’t metabolize Lidocain properly, so even though the radiologist juiced me up liberally, it wasn’t enough. It was also tough for him to penetrate my dura – possibly because of the sclerosing issue caused by my high histamine levels. After all of that pain my opening pressure came up as a boring normal level. Nothing to see here, folks. Except it completely rules out what my neurologist is saying about my shunt overdraining. My guess about why it’s not giving me a high reading is that the pressure lowers when I’m flat. There’s only been a couple of times when I’ve had high readings and I’ve been flat.

On Monday night, I ate some homemade spaghetti sauce and woke up the next morning to find that my entire mouth had swelled up, and the lining had sloughed off. I also had sores all over the inside. So tomatoes are now a big no-no. That’s a bummer because I make killer chili and lasagna.

Also kind of new in the past few weeks is another diagnosis. I’ve been struggling with this for at least the last 7 years as well. Doctors were telling me that I must be doing something wrong, blah blah blah. It’s super painful. I have hidradenitis suppurativa. I’ve had it come up in two different areas not close to each other and had to have “surgical intervention,” which makes it officially grade II. I’ll be seeing a new doctor Monday to talk about injections; it’s controlled by a medication that is similar to Imuran, which I was on in the past. The crazy thing is, I saw a very extreme case of it a month prior on a British show on Netflix called “Embarrassing Bodies” but had no idea that it was the same as what I had brewing. (Let me tell you, if you are fascinated by all things medical, that’s a good one to watch.)

‘Scuse Me, My Kitty Would Like to Get Stoned

Posted on by akiwifreund

My ears perked up when I heard that this was a real product being marketed. They calmed down again when I realized that since Minnesota has the strictest laws in the country regarding medical marijuana that it’s likely I won’t get my hands on any until maybe a decade from now.

The problem: I have horrific abdominal pains because I’m having an allergic and autoimmune reaction to the drainage catheter of my shunt. I’ve had this pain since July 11, 2011, the day my very first shunt was implanted. The neurosurgeon saw the inflammation with his own eyes during one of my subsequent surgeries.

If it’s a good day, I can’t bear to have my abdomen pressed on. The last time my PCP prodded my abdomen, I had tears leaking out of my eyes – and not because I am conjuring the pain up. I also have issues with using the bathroom no matter what is coming out of me. I can only tell you that it feels as if someone has inserted a knife into any and all of my openings and is waving it around like it’s a #1 fan hand at a football game. If it’s a really bad day I also have waves of pain rolling over me. One time I was crossing the street to go back to my apartment and my sister was helping me carry a few items, and she heard me gasp as if I witnessed a really bad accident. Nope. I just was suddenly overtaken by the stabbing pains. And there’s just no way for me to predict when I’m going to get hit by an 11 pain (because according to Spinal Tap, that’s the loudest). Could be because I’m breathing.

The solution? I’ve been told I will not be given opioids because they would just mask the pain. (My answer is always yes, please, I would like to not have the pain.) Tylenol, Advil and naproxen sodium are child’s play. I’ve also been put on various anti-depressants and gabapentin. I’ve tried ice or heat. I’ve tried stretching out my hips. Meditation is probably good for something, but so far has not made me feel better about having the stabbing pains.

This product is being marketed for women with pelvic pain that is the result of endometriosis and/or menstrual cramps. I wouldn’t even have to consume something, just insert that capsule like a suppository for the kitty and then lie back and let it do its thing. If it can work for those issues, why can’t it work for my stabby-stabby pains? Maybe I wouldn’t dread going to the bathroom too. Sexual relations? I would say hell yes, it probably will give new meanings to “420-friendly” and “Netflix ‘n chill.” I can just see the Craigslist ad now: “Fun lady with a great sense of humor looking for my partner in crime to experiment with my totally legal 420 vaginal inserts. Bring some Funyuns, just in case.”
http://www.kevinmd.com/blog/2016/02/vaginal-marijuana-menstrual-cramps-really-work.html

 

Digging for Gold

Posted on by akiwifreund

This morning, when I retrieved my mail while I was waiting for my sister and her husband to arrive, I received a notice from the Social Security Administration regarding my disability appeal. They said:

*You have the ability to stand and walk without assistance. (That’s a blatant lie – I use my cane for everything.)
*You have the ability to use your hands and arms to perform tasks. (Apparently it’s not a requirement for me to see what I’m doing.)
*You are able to get along with other people for short periods of time. (It’s called Minnesota Nice, bitches.)

“We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in the file, we have determined that you can adjust to other work.”

What would be really helpful is if they included a list of employers who had job offers for me and would not require me to be upright at any time. I can’t see well enough to travel to a location outside of my home, and most employers at least want an interview. So their insistence that I work “somewhere” is pretty weak, considering they don’t have an prospects lined up for me. (I don’t want to hear, “That’s how they do it.” I know they’re assholes.)

The next step is for my attorney to file a request for a hearing, which I understand takes 12-15 months to occur. In the meantime I’ll continue to go to doctor visits and try to find someone who can put a name on this disease and tell me what to expect.

This morning I went to the surgeon’s office at the U of MN to have my wound checked. When he put a fair amount of pressure on it, I started yelping, which led him to believe that there is still some pockets of pus hanging out back there.

Rather than going through the process of shooting me up with Lidocaine and slicing down deeper and purging out more junk, the surgeon took the stick end of a swab and used that to dig around in my wound – think of it as a meat tenderizer, he just kinda made hamburger out of my flesh – without any topical numbing whatsoever. I broke out in a sweat and I had tears rolling down my face. I knew I had to lay still but I was also fighting to get away from him and just make the PAIN STOP.

He said he was stepping out for a few minutes to allow the bleeding to die down; about 10 minutes and a good, sobbing cry later, his nurse came in to re-dress the wound. I’m glad I had that time to myself.

 

 

Netflix ‘n Chill

Posted on by akiwifreund

Minnesota is a pretty great state to live in right now. There’s lots of resources – especially in the Minneapolis/St. Paul area – and a push towards smarter and greener living. Unemployment is super low. I have forgotten what it’s like to be around nicer people (rather than worrying about being shanked), so I find myself thinking often, “Wow, that person is so nice!” Don’t worry, I know about “Minnesota Nice” – but usually I’m on the giving end of it, not the receiving end. On paper, it would appear that I wouldn’t have any trouble at all finding a match, because there are a good number of people with shared values.

However, I’m that person. I can’t go out on dates. I can’t join someone for a bike ride and a hike. I can’t say that I have to work until 6 pm, and then can we meet up for dinner later? I can’t go out on multiple dates with someone and then decide he’s not a match for me, and never have him know where I’m living in case he turns out to be stranger danger.

My only option left, really, is to tell dates they can come over to my place to, you know, watch Netflix and chill. Except every one of them thinks that I want to bang. I don’t!! It looks bad, I know. My apartment is a studio so the couch I have for visitors is in very close proximity to my queen-sized bed, so even if I told a date that I didn’t want to have sex, THERE IS MY BED, calling like a siren song.

I want to go out with men who are active and enjoy movies, wine tastings, art festivals, live theater and traveling, but those are the ones that do a crab crawl backwards away from me. Instead, I get messages on OKCupid from guys like Alex (age 28), who wrote two sentences to me, didn’t answer any of my questions, and then a week later said, “Hey, how about after work we have a lazy evening on the couch and watch shows?” I said, “You mean, ‘Netflix and chill?'” He said, “Does it sound better if I say that?” and I said, “No. I’m not interested in sextracurricular activities.”

On the flip side, someone whose junk has been up close and personal texted me a hello and asked what I was up to, then said that watching a movie sounded really nice. I asked if that was code for Netflix ‘n chill, and he said, no, he really did want to veg out and watch a movie. See? Sometimes men can act like normal human beings and not try to hump everything in sight. I’m guessing we have to put you on a 60+-hour-workweek first, though.

So, anyone wanna come over for Netflix ‘n chill, but not?