A Slap And A Poke

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.

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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.)

Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

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.

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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.

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