energy

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.”

Retrain My Brain – Gupta Amygdala Retraining Programme Review

Posted on by akiwifreund

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.

This particular series, The Gupta Amygdala Retraining Programme, is being offered by a doctor who was laid low by chronic fatigue syndrome (which I will shorten to the commonly known acronym CFS), which is also referred to as myalgic encephalomyelitis (the acronym ME for short). The Centers for Disease Control states: “CFS is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities.” (https://www.cdc.gov/cfs/) The CDC also indicates on their site that despite trying their best to figure out what triggers CFS, they haven’t pinpointed the cause. It could be a number of infections, it could be autoimmune related, it could be something in the central nervous system; they’re just not certain.

I was given this program because I have fibromyalgia. Fibromyalgia shares some of the CFS/ME qualities – mainly crushing fatigue and pain that does not go away with a good night’s sleep. Dealing with constant pain and fatigue also changes your brain and your outlook, affecting the way that you interact with the people around you, as well as your ability to handle your own sickness, or wellness, as it were.

The very first thing I noticed when I opened up my packet was this map from Dr. Gupta.
20170522_092902If you can’t tell, this piece is quite large and almost covers my entire area rug. As we found out, it is an interactive practice piece that you actually stand on and use to help retrain your brain to stop negative thinking.

The other items included in the package were a workbook and a set of audio and video DVDs.
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I was signed up for weekly interactive web meetings as well. In our first meeting, we were introduced to Dr. Gupta, and informed that the web meetings were actually the most important part of the program, and that the DVDs, workbook and practice poster were supporting materials.

The web meetings were 12 weeks long total, so it is quite a commitment if you decide to join the program. And there is a lot of material to cover. However, if you think about it, some of us have been sick for years. I’ve been sick for two decades. 12 weeks is really a drop in the bucket. It’s just a matter of adjusting your schedule and making room, just as you would for a physical workout program. You want to lose the weight? You do an hour at the gym. You want to lose the disease? You do a few hours a week at the Gupta program. 

So what is amygdala retraining? Basically, it’s to stop the negative feedback loop so you can start healing. Your body feels bad, so your mind gets stuck thinking, “I’m not good enough, I don’t don’t deserve friends if I’m going to bring them down, I don’t deserve love, I’m a terrible person, I’m a loser, I can’t do anything right, I hate my body, I’m going to stay sick forever,” etc. If you can get rid of that negative feedback, you can also retrain your brain to start a positive flow of thoughts, including, “I will allow my body to relax, I will feel comfort, I will smile, I’m choosing health and happiness, I trust myself.”

And back to that interactive poster that’s on the ground: That’s the “Stop! Stop! Stop!” technique that Dr. Gupta often refers to as part of the retraining. He encouraged us through the course of the initial training to actually follow the steps on the poster: think the negative thoughts, then hold out our hands and think or say, “Stop! Stop! Stop!” Then we would breathe and smile, return to our loving self, then choose to take the loving path and be kinder to ourselves in our thinking, then visualize health and happiness. We would repeat these steps over and over again – at first slowly, then faster, as if picking up anything that feels clunky at first but then suddenly becomes second nature.

Throughout his sessions he often took breaks for us to breathe, or meditate. We also had time to ask questions or interact. Dr. Gupta warned us that there would be times when emotions would bubble up and sometimes get the best of us. I tend to be pretty stoic except when it comes to dealing with my neurologist and neurosurgeons, so I was surprised when even I had a web session that affected me emotionally. The point is to not hold everything back so that our ego doesn’t get in the way of getting better.

The DVDs and audio CDs are helpful because there are some meditations included, and meditation is one area where I always need improvement and assistance.

Dr. Gupta does advise for anyone going through this program that the changes will be gradual, and to not expect anything earth-shattering immediately; after all, anything shocking would set us back, not make us better. Six months would be a good goal for feeling a significant improvement if you do the work with sincerity. 

I’m grateful to have these materials at hand for the long haul so I can refer back to them as often as I need to – because there’s so much to learn, and I’ll definitely need a refresher from time to time. And Dr. Gupta records all of his sessions so that we may go back and rewatch (or if you couldn’t make it to the session in real time, you can watch at your convenience). I did personally notice a certain calmness and lightness after each session, and I do feel like my attitude has shifted towards all of my diseases; I’m choosing right now to be loved and to be worthy of love, and maybe that will shift again in the near future to another positive focus as I journey on.

Dr. Gupta’s Website:  http://www.guptaprogramme.com/

immunizeLABS Has You Covered

Posted on by akiwifreund

Whenever I venture out in public, I try not to think about all of the surfaces that other people have touched, and what they have touched before they touched those surfaces. But I have to. My immune system severely lacks IgG3 and IgG4, which means I can’t fight off microbes like normal people can, and I’m blessed (should I say blessed?) with fibromyalgia and irritable bowel syndrome, which make me more vulnerable to illnesses and tougher to recover. The most recent confirmation that I was born with mast cell activation disease doomed me to vulnerability. I know what I have, I just gotta find a way to fight stuff off. Besides being diligent about washing my hands and not touching my face, what are my options?

I was contacted by immunizeLABS to try five products in the thick of flu season. I have been given these products as part of a product review through the Chronic Illness Bloggers network. Although the products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

First I’ll cover three supplements: Boost, Shield and PainRelief.
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Immediate basic impressions were that I was thrilled that these were room-temperature stable and that I didn’t have to store them in the fridge. I have so much more success with taking things on a regular basis when I have them sitting in front of me than I do when they are tucked away in a fridge. Also, you’ll notice that the contents are sold in dark blue bottles; most companies will do this when the contents are photo-sensitive and the ingredients degrade when exposed to light.

The most important thing about all of these products (including the items that follow after these three) is that they all contain colloidal silver. Colloidal silver is known to be anti-microbial. In fact, I purchased a quick-drying travel towel that is woven with silver threads because it is specifically anti-microbial. If you have done any kind of studying on your conditions (if they overlap with mine), you know that microbes tend to be our enemy and overtake our systems and are hard to get rid of.

immunizeLABS formulated each of their products to have a specific outcome. For instance, each one does contain different values of the colloidal silver, as well as ginger, cinnamon bark oil and medium chain triglycerides, but then the PainRelief contains curcumin, which has been used for centuries as an anti-inflammatory. You wouldn’t want to leave home without Shield, which included in its ingredients is the all-important vitamin C in a super dose, but there’s also other supportive items that you don’t have in your medicine cabinet. Add Boost to your routine, which includes glutathione, which is a supplement that assists with repairing and building tissues, making chemicals and proteins, and generally “boosting” the immune system. (Their complete ingredient lists are available on their website: immunizeLABS)

The products state to start with 1 teaspoon of product in 2-4 ounces of filtered water in the morning at a minimum of 20 minutes before you eat, gradually working up to 2 tablespoons of product in water over a week’s time. Here are pictures of what each look like before they are mixed in water (left to right: Shield, PainRelief, Boost):

The product labels say the flavors are “chocolate.” This is the only problem I had with the products. I know that these contain all kinds of things that are good for me, but I could never get past the flavor. My dad and uncle owned a hair salon for decades and they taste like what they use for hair coloring. I’m sorry. They just do. So what do you do? You mix it fast and you chug it fast.

So in the thick of flu season, I can say that I have successfully avoided getting taken down by any nasty bugs, despite being out often in public. I’m not sure if my inflammation has been systemically reduced, but not getting sick is huge for me. I did feel more clear-headed – brain fog is a real challenge – and my digestive tract acted like it was on an actual schedule rather than all wacky. I could also tell that my pulse was not jumping around after ingesting the cocktails. When it does, it’s an indication to me that my blood sugars are spiking or I’ve had something I’m allergic to. I will consider this an overall win. 

One of their other products may have helped to protect me, and that is their Breathe Easy Nasal Spray:
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I’m not a sufferer of migraines so I can’t give an opinion from that perspective. However, I often suddenly develop congestion – and I’m not sure if it’s because I’m experiencing a mast cell trigger, or if there’s pressure building up in my cranium from the cerebrospinal fluid building up. The Breathe Easy spray is a mixture of the colloidal silver plus sea salt, certain essential oils, as well as horseradish and cayenne pepper (say what??). I’ve been giving it a couple of pumps before I go to bed as well as when I feel stuffy, or when I come in from being out in public, and again, I haven’t gotten sick and the stuffiness goes away. I also consider this to be a “win.” In fact, you can use this one as often as you feel the need, so I think I’m going to do that right now.

I’m saving my favorite for last, and that’s the OralMiracle.
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I have all kinds of challenges with my mast cell activation disease, including my mouth burning and suddenly developing allergies and sensitivities where I didn’t previously have any. Even commercial brands that are on the market that boast to be alcohol-free still make my mouth burn. I also want to have white teeth just as much as the next person – why should I have to sacrifice that just because I react to strong chemicals? Again, this product contains the colloidal silver to control microbes; imagine how much of a boost it gives your mouth to have that anti-microbial assistance when you’re trying to prevent tooth decay.

The recommendation on OralMiracle is to swish 2 teaspoons for 3 minutes; “The longer you swish, the deeper the healing.” The taste is pleasant and most importantly, my mouth doesn’t burn. They strongly recommend that you don’t eat or drink for the rest of the evening so the product isn’t washed away. My budget is really, really limited right now, but this is the one item that I would spend money on again and again.

Please visit immunizeLABS for their entire line of products as well as their ingredients to make sure that they will be safe for you to use.

How Nice, She Included A Map

Posted on by akiwifreund

I’m officially clinically depressed.

I don’t know who was the first to diagnose me. It doesn’t really matter. You would be depressed too if you had worked your way through 54 doctors and none of them could tell you what was causing your severe physical issues, a good number of them misdiagnosed you, somewhere around 10 said it was psychosomatic, and around 49 of them told you to go away and don’t come back.

I’ve got anxiety too.

I can’t talk about a lot of the CSF stuff without becoming emotional. I also don’t sleep the night before appointments. Who wouldn’t react the same under these circumstances?

At some point, whether it was my counselor or one of my medical doctors or the actual medical insurance, someone determined that I should get help from a county organization that offers comprehensive help with mental health. Fine. I’m doing meditation, and I’m trying to be social while also trying not to wear my body out, and I’m trying to watch videos of babies and cats and dogs to keep my spirits up, but fine, if this is a resource that I can benefit from, then sign me up. But I told them that I still need a hospital bed so I can try to avoid bedsores, and I still need a neurologist and a neurosurgeon that won’t turn me away and who will listen to me.

So this past Monday the 19th I had my initial intake appointment, and two women from this organization come to my apartment to discuss the program and sign forms with me. I signed a release form for them to talk to my counselor, with whom they are very familiar, and they also went through various questions, one of which was, “Do you have a religious preference or religious beliefs?” I emphatically said, “No, thank you!” They smiled and nodded, and we didn’t go into more detail, but it was clear that I have zero interest in religion.

So imagine my surprise when I pull this anonymous letter out of my mailbox this afternoon:
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At first, I thought one of my friends (or even a frienemy) was having a laugh at me, especially since religion has been a hot topic in light of the stabbings and shooting this last Saturday. I wracked my brain; I thought there was a possibility it was the crazy German woman who was always telling me she was better than me and in addition, she was a good Christian; I fleetingly wondered if it was a relative of the ex or maybe a recent new acquaintance who contacted a friend for my address to send me this information about this can’t-miss fire and brimstone. The envelope wasn’t much help because it didn’t have a name on the return address, but I looked up the numerical portion anyway…

Bingo.

It’s from one of the two people who sat on my couch on Monday morning. They both heard me firmly say “No, thank you,” and both smiled and nodded. When I talked to them about my medical history and both were absolutely dismayed at the number of surgeries I had, my inability to still get a diagnosis, the swiftness with which I am sent away, the sheer number of doctors I have seen, my accuracy in my communication to my doctors and their refusal to “hear” me…let me say that last part again: THEIR REFUSAL TO HEAR ME. They said that they would collaborate with my counselor and also have an RN visit my apartment so that my physical and emotional needs could be addressed, and they would also review my medical records so that they would be worded more accurately for my disability case.

They saw me become emotional when I said that doctors were ignoring me when I told them exactly what was wrong with me and it would prolong my agony and pain, sometimes for years, when they ignored me; I was never wrong. They said again, “Your biggest challenge is that doctors don’t hear you.” Yes!

So why didn’t they HEAR me when I said “No, thank you” to religion?

There is a certain arrogance that comes with religion; if you practice religion, why is it assumed you are better or your life is better than if you don’t? If one person is religious and the other person isn’t and there is some debate about whether or not a ritual like going to church is practiced, why is the assumption that the ritual is the obvious choice and that the religious person should be made happy? Why can’t it be the other way around? Pray on your own time. God is everywhere, right? Why do you have to go to church to put money in the pastor’s wallet?

I got this letter after business hours so I have been left to my own imagination to compose letters, and most of them ended with an emphatic “Fuck you.” Most importantly, this organization is a county organization, and no where does it state that I must follow a certain religion in order to receive services. That was one of the first things I looked for, because if I would have known that that was a requirement to be in the program, I would have told them not to bother before making the appointment.

So now, just three days into the program, I have to file a complaint with the Clinical Director.

If I do compose a letter, it’s going to include the fact that I have traveled around the U.S. and have moved across the U.S. four times, and have used up two passports, and since I’m a 42-year-old woman who has lived a fairly adventurous life, I know what options are available to me as far as belief systems go. “Have you considered science?” I think I’ll end my letter with that.