All You Need Is Your (Whole) Health Back (Movie and Book Review)

Half of the adult population around the globe has some sort of chronic condition, varying in severity. Some are lucky enough to barely be bothered by it except as a reminder on their calendars once every few years to get checked by a doctor for any notable changes. Others can’t move an eyelash without being reminded that their body has taken on a long-term burden and there’s no relief in sight. A huge majority fall somewhere in between. Because of this, and social stigmas falling away regarding the discussion of chronic conditions, the market is being flooded with all kinds of materials and “how to” manuals for coping.

Through the Chronic Illness Bloggers group, I was lucky enough to be given these two products as part of a product review through the Chronic Illness Bloggers network. Although these products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The two items that I was given in tandem were a documentary called “The Connection,” and a book called “The Whole Health Life.” I didn’t approach either medium with any expectations, which turned out to be a good thing, because I tend to be very particular and picky – I don’t want my movies or reading materials to be too “preachy,” nor do I want them to assume that I know nothing about my diseases. Most of the time I see manuals out on the market that are written with new patients in mind, not with 20-year war veterans like me.

First, I’d like to cover “The Connection.” I’ll admit, I reached for this first because I didn’t feel like I had the attention span to get me through a book right out of the gate. I was quite pleasantly surprised. It was a good pace, but not overwhelming, while still giving the audience constant reliable information to process. For instance, I learned about “medical hexing” – many patients are told by doctors that we’re not going to get better. Would you believe it if I told you that two weeks ago, my primary care doctor told me that I should just give up and accept that I will never find a neurosurgeon who will be willing to help me with another shunt surgery and who will take my tumor out? Boy, is that ever a hex! But a hex doesn’t have to be that obvious. It can be about giving you a pill rather than looking at your whole lifestyle and looking at what can be improved upon. 

More points from the movie hit home for me, especially since I’m having such a hard time finding doctors who will help me. For instance, if I have zero support – friends, family, doctors – I’m three times more likely to die early. Luckily I have some really great family and friends. Also, belief is part of why we get better, but it takes both the doctor and the patient believing. So far, I don’t have the doctors backing me up. And I also learned from the film that our genes do play a major role in what we do develop as far as diseases go, but our life experiences and our environment also trigger the genes. In other words, you could be perfectly fine but if you go wading knee deep through an oil spill, chances are that MS is going to come leaping out that has been lurking all these years.

So if you haven’t picked up on it, the documentary “The Connection” got my attention. Because of that, I was confident that the book “The Whole Health Life” would be engaging – and it was. And that says a lot, especially coming from someone who has the attention span of a gnat at the moment.

As readers, we can spend more time on the book, relating to what the writer is saying about wading through the soup of pain and foggy brain, trying to get through an able-bodied world and looking normal on the outside. Immediately the author, Shannon Harvey, introduces the core concept: we cannot deal with health by separating “body” health and “mental” health. They are intertwined and inseparable. A pill may address one portion and meditation may address another portion and talk therapy may address yet another potion and engaging in positive social activities may be uplifting, but when consumed in isolation, they hardly make a difference. When combined, they improve a person’s well-being by leaps and bounds. Ms. Harvey breaks it down into 10 topics to easier process and incorporate the practices into daily living.

For me, meditation is difficult. As I mentioned before, my mind is more that of a squirrel than it is a turtle, but she talks about the benefits of calming the mind and recommends a few easy steps that anyone can pick up. Emotions logically follow right after that. What are we doing to process our emotions? What do we allow to play on our inner recording? And then there is the “placebo effect.” Let’s try changing the name of this, the taking of sugar pills and still seeing positive results, as if a patient has taken “real” medicine; what is really at work is the power of belief. The belief that a patient can heal and become well again (or at least have an improved life) that comes with the motion of the taking of the medicine is just as powerful as the drug itself and has been documented for hundreds of years; it’s why people “pray” when it seems all hope for recovery is lost.

Of course, on the physical side, what we put into our bodies and how we move our bodies makes a huge difference. Eating the foods that are the best for us, sleeping the right amount and exercising to the best of our abilities are all important in our recovery and maintenance.

As a “spoonie,” as those of us are known who have chronic conditions that cause fatigue and pain, many of us keep blogs, as I do, as well as participate on social media like Facebook, Twitter and Instagram. We seek out others who are like us. We appreciate having others who understand our daily (and sometimes hourly, minute-by-minute and second-by-second) struggles. I think that “The Whole Health Life” would be a good book to read and re-read because we tend to get stuck in patterns that reinforce the negative feedback loop – myself included. If someone isn’t feeling up to concentrating on words, then they can sit back and watch “The Connection” for some reinforcement.

Please visit the documentary movie “The Connection” here.

You may purchase the book “The Whole Health Life” by Shannon Harvey through Amazon here.

The Flame

There are times when I feel ageless, or when we encourage each other to be ageless, and that’s when it comes to loving. We recite that trite old saying about loving like we’ve never been hurt before and we believe it when someone pops in and we recognize, somehow, our twin flame has found us.

I realize I’m speaking in generic terms, but that’s because I’m not the only one who has been on this particular ride. You instantly know that you’ve met the person that you want to be better for, who is going to make you a better person, who isn’t going to judge you for your past number of sexual partners or your weird preference of consuming all of your food in bite-size pieces or smaller (think M&M’s or Cap’n Crunch).

And more often than not, your twin flame starts off far away. It doesn’t have to stay that way; you can choose to move closer, but it’s bound to start with a great number of miles separating the two of you.

And it doesn’t have to be a romantic relationship, but if it is, then it is, and it’s intense.

I met this person purely by chance. We didn’t have to talk, but we did, and once we started talking, we didn’t stop. We talked every day. We talked for hours. We traded text messages and talked on the phone. He was the first person and last person I talked to every day. I shared things with him, and the most things. I think it was the same for him, or at least, that was what he told me. I think he was being truthful.

We discussed the concept of the twin flame and decided that it must apply to us because of our physical and emotional/mental bond. It’s not just a soul mate.

We share some of the same personality traits. We demand perfection. We are our own worst critics, too. He and I are both intrinsically drawn to soft and tender things, and would discuss what damaged our relationships in the past, and what we hoped would happen in the future, including how we wanted to treat each other. I am an unapologetically sexual woman, and because he was my twin flame, I swore there were times when I could physically feel him – his hand on my skin, his breath on my cheek, his leg tangled up with mine. If I closed my eyes, I could see his eyes, blinking at me. There were times when he would send me a message, asking if I was okay. At the very moment I would be struggling with news from a doctor’s appointment and possibly even crying, and somehow across the miles, he would know. Sometimes I could tune into him and feel him breathing. There were so many times that this happened that we stopped saying “wow” and just rolled with it. It was just us.

After some time, he started being “busy.” His phone calls became less, his messages shorter. I was no longer his first morning message or his last goodnight. In a car full of strangers, I ended up having a text conversation with him that was meant to clear the air – and it did, for a bit, but he claimed that he truly was busy, and nothing had changed. I had asked him point blank if he thought that I was okay to fuck, but not relationship material. He gave me the impression that he was shocked that I had come to that conclusion and assured me that he did not think that I was stupid.

Still, though, I felt the ground rearrange. It was mostly in the way that he was speaking to me. I could tell that he had lost respect for me. He started to pick apart everything that I was saying. Early on, when we were getting to know each other, he had said that this was a warning sign that he was done with a relationship, and I had said that it was for me as well (and I remembered). As soon as this happens for me, there is no turning back – when the pedestal is yanked out, one can’t just jump back on. So he chose to focus on phrases I was saying by repeating them, and demanding, “What is that?? What is that all about? Why are you saying it that way?”

Our last phone conversation didn’t go well. We hadn’t spoken for a few weeks and he called out of the blue. He asked how everything was progressing for housing (I am in the process of getting into subsidized housing through the city where I live and it’s a complete nightmare), and he also asked me about my most recent doctor visits. I had let him know about being rejected by the most recent neurosurgeon. He told me that I clearly hadn’t done enough to advocate for myself. As I explained to him later, it’s really hard for me to hear that. Throughout all of this, I’m the only person who has kept me alive. I have been the singular person pushing to get help. I have joked, yelled, cried, organized, corrected, called, complained, assisted, demonstrated, all while I’m incredibly sick, just to try to get help – any help at all. Gah – even typing that sentence makes me cry. I think about all of the doctors who have mocked me to my face or have written false and sometimes horrendous stuff in my files…and it almost sounds too crazy to me. Almost.

The next time we talked, I tried to very gently ask that we not discuss my housing or my interactions with my doctors. Quite frankly, I didn’t feel up to the criticism. At first he was very defensive, but then he thanked me for asking in that manner, because he would respond positively to it.

But then the next time we talked, he asked me if I was ready for my next appointment. Then he said again that I should be doing more – that I should write a letter to the doctor, something along the lines of outlining what my symptoms are without showing any emotions, because doctors want facts but they don’t want emotions, and then he suggested I look up the doctor’s published work. I started to explain that the letter-writing campaign didn’t/doesn’t work because when the doctors get a heads-up that I’m coming, then the doctor will ask me to fax over records and then I’m fucked, so I’ve tried that route and it hasn’t worked in the past. Then I asked him to have faith in me that I know how to handle myself. He said that what I was doing wasn’t working so he was looking for solutions for me. I told him that the fact that I have seen 57 doctors didn’t have anything to do with what I was doing wrong but rather had to do with the fact that I had a scary rare disease that no one knew how to treat. I also have moved across the U.S. on my own 4 times and I get shit done, so I’m not just throwing my hands up and not doing anything. He said he didn’t say I was doing something wrong, just don’t paint myself into a corner. I asked him to explain that, but he didn’t, not fully.

The thing that really got me, and that I had a really good cry over, was his refusal to have faith in me and my ability to figure this shit out. I’m coming up on 7 years of this. He’s disgusted with me because I can’t make others do my bidding. (I invited him to physically join me. That was a big, fat NOPE.) Since that conversation, we’ve barely talked at all, except to rehash his work.

So where does that leave me? Well, I’m working on becoming a stranger. It really is difficult. Our human burdens – my depression and anxiety, his demands for perfection – win this lifetime. I know he’s left me already because I can’t tune into him. If he does send me a message, he tells me how wonderful and caring everyone else is. He no longer sees this quality in me because he has picked me apart. I already know that he has written me off as being too negative. [Show me anyone who has gone through anything remotely similar where even their primary care doctor is telling them to give up, and it would be impossible to be cheerful all of the time. 80% of the time that we were on the phone, I was upbeat.] 

Now I have to work on severing and remembering that I was probably lucky to have made it this far. Every other week I add his name in a meditation circle for healing of the soul.

And I’m sad. Sometimes I wonder if he is too.

Gender Bias: It’s Not Just for Work

Everyone is going crazy for this article that was published about a man and his subordinate who swapped names as an experiment to show gender bias in the workplace. Really, it’s not so much an article as it is a series of tweets, but you get the full picture. And REALLY really, if you’re a woman and you’ve worked outside of the home or if you’re a woman and you’ve been outside of your front door, you know how this went.

We Swapped Names and I Was So Surprised (Said Every Male)

But if you know anything about my blog or about me, I write about my experiences as a woman in the American healthcare system. Now I’m a really concerned woman as I watch a very out-of-touch bunch of Republican-led lawmakers work on dismantling the social safety nets that will help keep me housed and fed as a disabled adult with no chance of working (at least, not now, for as long as I’m allergic to the shunts they keep putting in me).

A huge barrier to my care is the fact that I’ve seen 57 doctors in 6.5 years, and a good number of them have told me to go away and not come back. My disease and symptoms scare them. They can’t diagnose me. I can tell them exactly what’s happening with my body, but they don’t believe me – they tell me it’s not possible, even when I demonstrate it and they see it with their own eyes.

I was told by someone close to me – a man – that I probably wasn’t doing something right. I wasn’t advocating enough. I wasn’t demanding enough. I wasn’t yelling enough. I wasn’t stoic enough. I was probably too emotional, or not enough, or not the right combo. I was just the wrong kind of patient and it was hurting my case.

By the time you get to 57 doctors in 6.5 years, you learn a lot of tactics: cajoling, crying, stoicism, joking, demanding, taking binders of info (so they can’t claim that they don’t have enough of your info at hand to continue).

My conclusion is that I just don’t have a penis. I wouldn’t be doubted. I wouldn’t be treated as if I’m being over-dramatic or like I can’t handle four-syllable words.

I always invite someone who has told me that I’m not doing enough to come with me. Of course that person suddenly becomes too busy to join me…but not too busy to dispense advice from his armchair.

immunizeLABS Has You Covered

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.

Living with……

One of my friends only just recently decided to post on Facebook the random challenges she faces as someone who struggles with anxiety on a daily (and really, constant) basis, including scenarios similar to these. Posting on FB makes her particularly vulnerable (I think) because people tend to be a lot more random; here in the blog sphere we can tailor our focus and therefore possibly in turn be a more understanding audience for our fellow bloggers right out of the gate.

I’m learning to live with anxiety myself now, something I’ve never had to deal with. It hitched a ride with my major depressive disorder and PTSD (yes, they’re official). I now get anxiety every time I have to talk on the phone. Because of the pressure in my cranium and where the tumor is pressing, I forget words, and I stutter and stumble, and I’m very self-conscious about that. I often forget what I’m talking about mid-sentence too, especially if it’s complex.

I’ve always been a very social person. Because of anxiety though, I have to talk myself out of cancelling plans every time. I usually don’t sleep the night before doctor appointments. Recently I didn’t sleep after an appointment. But the absolute weirdest thing that happened is that I had a panic episode watching a movie. A stupid movie. I can’t even remember which movie it was (I burn through them quickly – 6 or 7 a week) – but I had to shut it off. It wasn’t an action movie.

It’s a strange club to be in.

Please read my fellow blogger’s piece on anxiety.

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I often think that the hardest thing with anxiety is that people without it can’t comprehend how difficult it is to do simple things like taking your child to school, during the school run. C…

Source: Living with……

Are You An Organ Donor?

I have friends who have received organs from living donors, from cadaver donors and from donors who have indicated that they wanted to donate their organs and tissues in the event that they suffered trauma that they could not recover from.

There just aren’t enough organs for the people that are listed. And organ rejection is a real concern. But scientists are looking to pigs to fill in the gaps on how we can avoid rejection:

New Hope in Organ Donation Crisis

Also, this story has been making headlines from the Mayo clinic, based here in Minnesota. It’s the first facial transplant that the Mayo has attempted. It was also surreal to realize as I was originally reading the article that I have a personal connection to one of the families. I was not much younger than Lilly when her mom and I met each other and became fast friends while attending a school for the arts. I can’t imagine going through all that she has – marriage, pregnancy, the sudden loss of her spouse, and then deciding to go ahead with this donation – at her age, but damn, she has done good. By the way, their baby boy is absolutely adorable, and absolutely adored.

Mayo Clinic Performs First Face Transplant

We have so far to go with science and healthcare. We don’t know all there is to know. We have to keep moving forward, and supporting lawmakers who approve budgets for science.

 

Dear Seema: The Politics of Prevention

We are the only privileged nation who allows insurance companies to make a profit off of our sick bodies and demonize those of us – ALL OF US – who need healthcare. Because after all, all of us will need healthcare, whether it’s at the beginning, middle or end of our lives.

communicating across the boundaries of faith & culture

Note: Seema Verma is President Trump’s nominee to lead the Centers for Medicare and Medicaid Services in the United States.

Dear Seema,

I’m a Registered Nurse who works in Boston, Massachusetts. I have witnessed first-hand what it is like for people to go without insurance, to delay preventive health screening only to find out that cancer is a far more expensive problem.

There are not a lot of things that make my proverbial blood boil, but reducing access to preventive healthcare, including maternity benefits, does. It makes me so angry I can’t see straight.

Look, I get it. Health care is expensive. Someone has to pay for it. But everyone bears the burden of an unhealthy society and while the Affordable Care Act (aka Obama Care) was not perfect, it began to put some policies in place that have been needed for a long time.

I come to this not from…

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Bring It On(line) – Trusting PatientBank With Your Medical Records

I have purchased some awfully pretty, recycled 3-ring binders to haul around my most relevant medical records to my doctor appointments. They’re intimidating because they’re large and they’re many. I also have my own laser printer/copier/fax in my tiny studio apartment. It was the single-most best score from when I lost my job – my former employer let me keep it as my consolation prize, of sorts. But for the love of all that is holy, I cannot carry all of that with me to every appointment. But I need it all! One doctor told me that they have 1,200 pages in their system from only the last 6.5 years that is a combination of what they have logged themselves, and what I have given them.

This is where PatientBank comes in. Disclaimer: I have been given access to PatientBank.us 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.

When I received this assignment, I was encouraged to have this company request as many and as much of my medical records as possible. Little did they know that in the last 6.5 years I had seen 57 doctors in 2 different states and who knows how many disciplines (I think 8? Possibly  more). Now, I had just gone through quite a lot of nastiness getting some records because I’ve been trying to get disability as well as go through the process of getting my case looked at by the Undiagnosed Diseases Network through the NIH, so I had had an influx of records shortly before this opportunity.

However, I didn’t have a lot of the records from the past year and a half. The Undiagnosed Diseases Network wanted to go back 10-20 years prior, and my attorney had gotten some records sent directly to him for the more recent stuff, so I figured I could still give PatientBank a pretty good run. I created a login and password at PatientBank and the first logical place to go for new users is to create a new request:

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In this case, I’d like to request a copy of my records from a doctor in Minneapolis, so I can search by his/her name and the state. If his/her name is in the system, I can choose it in the menu. If it isn’t, there is an option to add it.

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After you choose the correct physician, you can specify the date you visited, and whether or not you want “sensitive” info included. If you are not sure what sensitive info means exactly, you can let your mouse hover over the blue text and the black text box pops up and explains what might be included.

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Then you click on “Add to my order.” I got the pop-up screen with a prompt to sign to release my records. Here’s where it’s really, really tricky, folks. I have a touch-screen laptop. You might get pretty good results if you use a smartphone/iPhone. This pop-up window gives you the instruction to “click and hold down to draw.” But if you actually have a mouse in your hand, it’s going to look nothing like your signature, and you’re going to have a really hard time convincing your doctors and hospitals to release your highly sensitive info.

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What happens while you wait? You can see your pending orders under the menu item “Requests.”

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You will also get periodic emails from PatientBank that state in the subject line what’s happening with your request. I really tried to get a good variety of requests going – some hospitals, some large group doctors’ offices, some very small doctor’s offices. The email subject lines would vary from stating that they were still working on my request to the request was successful. There were a couple that had failed. The suggestions regarding why they had failed were that it was possible that I 1) hadn’t been a patient there; 2) it had been too long ago and the records were destroyed; 3) my date of birth was wrong, or 4) my name didn’t match. (I laughed because none of the above applied to me, especially because other doctors referred to my visits to those doctors and they were recent visits.)

At one point I had accidentally requested records from an individual doctor as well as from a large system that took care of his records, so when I received his records as part of the large bundle but still received emails stating his records were pending, I attempted to use a pop-up chat to ask that the individual request be cancelled. Unfortunately, an entire week went by and the chat was not responded to. I resorted to emailing the company and received a response. 

When I started seeing successful results rolling in, I went to check my records. When I clicked on “View” next to the entity that sent records, nothing happened – I just got a blank page with a cloud in the background. I didn’t think this was behaving quite as it should be, but I’m quite click-happy and I got around it for the time being by actually clicking on the button labeled “Download” at the top of the page that is meant for saving the document directly to a drive or computer. I started this process in the month of December, 2016, and now in February, 2017, everything is functioning as it should, so it seems that this is no longer an issue.

I had the opportunity to speak to Kevin Grassi, MD, the Co-Founder and Chief Medical Officer of PatientBank just a few days ago to go over some of the finer points and challenges of the system. The communication issue with the chat has been resolved and shouldn’t be a problem now, though I haven’t had to use it again, so I can’t confirm. Kevin pointed out that the system has the capability of patients uploading documents so that we truly can have everything in one place (!) – because let me tell you, I have about four discs that I’m tired of keeping track of weirdo passwords to. However, a limitation to that right now is that actual films/scans can’t translate on PatientBank. (If you’ve ever played around on patient portals and been lucky enough to look at CT scans or MRIs, or been in an anatomy class where you can virtually strip a cadaver down to the bones, you will understand how much power is needed for imaging – and then, you know, multiply that by millions for patients…)

An option that Kevin posed to me was the possibility of sharing records. The sharing could be anonymous; the option could be to only allow doctors to look at a patient’s records in case they would like to find similarities for other cases, or the other option would be for patients to find each other. I let Kevin know that I would opt out of both of these. I could really dive deep into why I immediately clench up at the thought of either and both, and right now, this is the best explanation I can offer. First, I have a deep distrust of doctors at this point. Two of the records that I got back from my initial requests included such gems as “I suggested Tai Chi but patient was non-compliant” and “patient is bragging about her surgeries and has Munchhausen’s” (after only seeing me for 20 minutes – and now we know that my brain has literally collapsed and I have a tumor). Second, I am not a big fan of getting into support groups with other patients. Sometimes it turns into a situation where we all end up trying to defend ourselves and our symptoms and the way we feel, and sometimes we all end up really depressed.

One of the features that I really like is that I can actually email a link of my documents to my attorney directly from PatientBank. The University of Minnesota bundle, which I think covers something in the neighborhood of about 8-11 doctors (I gave up counting), is about 250 pages. I have the option to fax directly from PatientBank too, but good grief, why would I?! I’m gonna send the link so my attorney doesn’t fire me!

Kevin assured me that other features will be added in the coming year, so I look forward to trying them out. Technology in healthcare is here to stay and PatientBank is doing a great job of navigating the future.

Visit: PatientBank

Why women are not sl*ts- they are temples

How to be a girl or a woman in the world, and how to avoid the pitfalls of automatically thinking “slut” or “whore” and assuming that we are just vessels for men’s pleasure and disposal starting from an early age.

hairyarmpits

The Golden Temple (holiest Sikh shrine), Amritsar, Punjab, IndiaSri Harmandir Sahib. Source: WordPress

I see myself as a Goddess. If I value myself and my body and decide that it is sacred – does that mean no one can come inside and visit? No. A truly beautiful temple has many visitors. This doesn’t mean that a woman who saves herself for one man or woman or trans person, is any less of a temple.

We need to see ourselves as beautiful beings, and tell our friends, no – just because someone burnt down the alter, or wrote on the walls, does not mean you are any less of a goddess temple. As the line says in the poem– “no man can make a wounded energy of your flesh.”

And no name- no shame- that you felt after the one night stand, the rape, the callous looks of someone who is upset about something in themselves and has…

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