Episode 06 — How to Keep It Together when it’s all falling apart

In this episode, we are going to be talking about keeping it together. Yes, in the sense of mentally and emotionally weathering life and the world around you, but also (and more specifically) keeping up with all the little changes that happen when a new chronic illness diagnosis or disability happens.

You start with problem X, but that leads to some new symptoms that could be problem Y, and so you get sent to a new specialist who sends you for new kinds of tests, or gives you a new medication to try. And then, the medication might have a side effect that you need to control, so that’s more doctors and maybe additional treatments — where does it end? Before you know it, it feels like your life is both a) falling apart and b) completely subsumed by this new diagnosis, like a giant octopus wrapping its tentacles around everything.

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Hello and welcome to episode 5 of the podcast Tips and Tricks on How to Be Sick.

I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us.

In this episode, we are going to be talking about keeping it together. Yes, in the sense of mentally and emotionally weathering life and the world around you, but also (and more specifically) keeping up with all the little changes that happen when a new diagnosis or disability happens.

For some people, things start gradually. You have one or two symptoms that show up and just hang on indefinitely, or bring other symptoms along to the party. Medications, doctors, and treatments build up over time, and you adjust slowly. Each new thing is just another one to add to the list that you’re keeping in your head of Stuff To Remember.

For other folks, things happen suddenly and all at once. A sudden illness that causes long-term damage, or an injury that changes everything. One day your life is familiar, the next it seems like everything is different and you have all this stuff to keep track of that you’ve never needed to consider before. Instead of gradually collecting doctors and medications and treatments and special things to assist with daily life, it’s all dumped in your lap at once, and how are you supposed to keep track of it all?

For most people, it’s probably a combination of the two. An injury or acute illness sets things off and there’s suddenly a whole new layer of complexity to life, but then it keeps building over time. You start with problem X, but that leads to some new symptoms that could be problem Y, and so you get sent to a new specialist who sends you for new kinds of tests, or gives you a new medication to try. And then, the medication might have a side effect that you need to control, so that’s more doctors and maybe additional treatments — where does it end? Before you know it, it feels like your life is both a) falling apart and b) completely subsumed by this new diagnosis, like a giant octopus wrapping its tentacles around everything.

Well, I don’t have a good answer to that last question, but what I do have are some suggestions for how to keep this new layer of your life in some semblance of order so that it doesn’t necessarily have to feel like it’s taking over everything else.

To start with: keep medical records.

I’m not talking about the ones your doctor keeps (though, if you can access those through an online portal, I encourage you to do so, if only so you are as familiar with your own health as possible), I’m talking about your own personal information. Stuff like allergies to medications, surgeries you’ve had, major health issues, and any medications you take.

You know all that stuff, right? You can rattle if off when necessary, or put it down on new patient intake forms at the doctor’s office?

Great! Now, consider what happens if you can’t do that. Maybe you’re really sick, or having a negative reaction to something, or you’re injured in some way that prevents you from being able to communicate that information. Or, maybe you’re just have a day where it’s hard to think, like your brain is wrapped in cotton, or you’re mentally trying to walk through fog, and you can’t remember exactly what things you’re allergic to, or what medications you take.

I call it my “cliff notes medical history” file, and on 2 pages of a standard doc file, it has all the information I need to give a new doctor or hospital that has never seen me before and has no access to my existing records. It has:

  • My name, address, phone number, and birth date
  • My social security number, insurance information, and preferred pharmacy
  • My doctors, what their specialties are, and their phone numbers
  • My medication allergies & what happens when I take them
  • My current medications (name & dosage schedule), what they’re for, and who prescribed them
  • My current OTC medications and supplements & why I take them
  • Any recently discontinued medications, like antibiotics or corticosteroids
  • My surgical history, including when they were done & why
  • My personal medical history, including my current diagnoses and necessary mobility aids
  • My family medical history, specifying who in my family had what medical issue
  • 2 different emergency contacts, including name, phone number, and relationship to me

That sounds like a whole lot of stuff, doesn’t it? It really can be, and I have a pretty complicated history, with a large number of current medications and allergies — but it still only takes 2 pages in a not tiny, cramped font size.

a text-obscured image of a print out that includes sections for many types of personal medical information a text-obscured image of a print out that includes sections for many types of personal medical information

Before I moved closer to the city, and switched most of my doctors to ones in the same hospital system (and thus the same electronic medical records accessed by everyone), I would update & print out my file before every appointment I had, just to make sure that everyone was on the same page, and that nothing was getting lost in the shuffle. If I saw a doctor only once or twice a year, I would specifically highlight any major medication, allergy, or surgery changes to my history since the last visit.

When you have doctors who aren’t in the same system for medical records, it can be incredibly easy for stuff to get lost if you’re seeing multiple practitioners. It gets actually dangerous if multiple people are prescribing you medications and they aren’t all always aware of what others have prescribed. This is the reason you’ll often be told to bring all of your medications with you, in their original bottles, when you see a new doctor. But, if you’ve got a whole cabinet full of medications, it can be less frustrating and clearer for everyone if you keep good records and bring those, instead.

Be sure to keep the file safe, if you are going to do like me and include sensitive information like social security numbers and such. Start your document with your identifying information that you know physician’s office staff will ask for, which is generally name, date of birth, address, phone number, any insurance information you have, and where you get your prescriptions filled.

I like to make the second section of my list a list of my physicians, and I include their specialty and phone number, because I keep a copy of this document on me when I’m out and about on my own, and especially if I’m traveling. If I’m out somewhere and have an asthma attack that leaves me unable to speak, I can still make sure whoever is caring for me can identify and contact my pulmonologist. But, even in non-emergency situations, the list has been useful for my doctors. I was having dental surgery and in the middle of it, the oral surgeon decided he needed to talk to the doctor who manages my immune treatments, which he was able to do without making me talk through local anesthetic because it was right there on the page.

The third section is the list of allergies and I put it in red font, because allergies are always listed in red in medical charts, and people with allergies get a special red hospital bracelet to make sure medical personnel are aware of them. Even if an allergy is “mild” it should still be listed, for safety’s sake. If you don’t have any allergies, write NKA instead, for “no known allergies.”

Section four is medications. For my own ease of reading, I divide them up into 4 subsections: routine oral meds, routine and PRN (or “as needed”) inhaled meds, any other prescribed meds that are not oral or inhaled, and supplements and OTC (that is “over the counter”) medications. I include the dose and how often I take it, the reason I take it, and who prescribes it if it is not my primary care physician. This is useful for giving to doctors and emergency personnel, but it’s also really useful for me to be able to just see the list of things in front of me, instead of needing to look at a dozen or more little bottles. Plus, this is a convenient way to remind myself of when I last got any medication that is not a routine, every day sort of thing, like when I get IVIG treatments.

I mentioned above that I include a section for recently discontinued meds. This is not something that will be necessary or useful to everyone, but it is for me, particularly when my asthma is flared up and causing trouble. Some medications, like antibiotics or steroids, can continue to interact with other treatments even after you aren’t currently taking them, or cause other effects as they leave the body. It can be very important for your doctor (or an emergency room doctor) to know that you’ve just come off a course of prednisone, or you’ve just finished a course of Cipro.

The fifth section is any past surgeries, the date they were done (as near as possible – I had my tonsils out when I was a kid, and all I can really pin down now is that it was some time in 1987, probably, but that’s close enough), and why they were done. If you have a significant surgical history, particularly if they were recent or may need to be looked at again, it’s worth considering including the name of the surgeon and the name & location of the hospital where you had the surgeries. If someone has a spinal surgery, for instance, and then falls down, gets injured, and ends up in a different emergency room, that ER doc may want to talk to the surgeon before clearing the patient to leave.

Section six is where I list my personal medical history. The more complex the history, the more valuable this section is, I think. If you’ve gotten it written out and saved, and then printed and handed over, you’re less likely to forget anything when talking about your medical history. You know how it goes; you go in to talk to the doctor about 1 specific thing, like the rash you’ve got on your leg that just won’t go away, and you’re so focused on that one problem that you completely forget to mention that you’ve got some other, seemingly unrelated medical issue, like anxiety. Which maybe wouldn’t be a problem, unless the treatment the doctor gives you could affect it, like giving you a course of steroids to knock down the inflammation, not knowing that the potential side effect of anxiety and mood swings could make your existing issues worse. So get it written down and recorded, and you & your doctor will have all the information available.

I also use this section to detail the mobility aids I use. My usual doctors already know, of course, but in an emergency situation, this lets emergency responders know what kind of help I’m going to need if my usual mobility aids are unavailable, which lessens the frustration for everyone, and reduces the risk of injury to me.

Section seven is like section six, but for problems in your family, not necessarily in yourself. A lot of medical issues are genetic, and so it’s important to know as much of that information as you can. Obviously, not everyone is going to have access to a full family history for any number of reasons, but this is a good place to list that, as well. If you’ve got parents, siblings, grandparents, etc. with diabetes or heart problems or cancer or anything else, list it here. If you don’t know if you’ve got blood relations with medical problems, list that instead.

In the eighth and final section, I list my emergency contacts. Doctors’ offices always want a person to contact in an emergency, and in an emergency situation there should be at least 1 person listed that can either help you or get in contact with other people who can. If you are traveling with someone, include that person’s information here, even if they’re not your normal emergency contact, just because they’ll be the one most likely to get to you in an emergency.

I also include a footnote line that includes my first initial and last name and the date last updated, so that medical providers know how current the information is. If you put this together, it’s a snap to keep updated as you go, just adding or deleting information from it as things change. You’ll have an updated record to give to medical providers AND you’ll have an updated record for yourself. You can print it out, keep it on a thumb drive, on your phone, on a cloud storage site – whatever is easiest and most convenient for you.

So what about other stuff, like medications?

2 major suggestions: daily pill organizer cases and a reminder app on your mobile device.

I know there’s a stereotype of just grandparents using those 7 day pill organizers, but hear me out. You can get them in tons of sizes, colors, and styles, and they help eliminate the panicked thoughts of, “wait, did I take my meds??” Even if you’re only taking one or two different meds, using the 7 day organizers offers a number of benefits:

  • You’ll always know a week in advance when it’s time to refill a prescription, leading to less stress and last minute freak out
  • Having days labeled can help keep you oriented if, like me, you sometimes lose track of what day it is
  • You’ll only have to go through and open all the bottles once a week, which is particularly nice if you’ve got achy hands or wrists, especially if you take a lot of meds
  • You get to have that smug little grin when you dump out exactly enough pills to fill the case without looking or counting

Just don’t have meds dosed out into these organizers if you’re traveling out of state or country, as different jurisdictions have different laws about meds needing to be in their original containers, and it would suck to get stopped for a traffic violation and have your meds confiscated.

So once you’ve got the pill organizers, it’s still good to have a backup way to remember to take your meds. Having them set out is great, but it’s not going to remind you to pick it up and take the day’s pills out of it if it’s out of sight. That’s where a reminder app comes in. My personal favorite is Medisafe [Google Play] [Apple Store] [Amazon App Store]. This is a reminder app that will sound whenever it’s time to take your meds, but it’s also a whole lot more than that.

If you add your meds using the autocomplete function in the app, Medisafe will cross check your meds for interactions and warn you of any it finds. Almost all the meds I have added to it also popped up a little 1-3 minute long video by a pharmacist, explaining what the medication is, what it is used for, any common side effects, and tips on taking it.

In addition to the medication reminders, you can set the app to remind you to refill your prescriptions, make doctors appointments, or show you a report of how well you’ve stuck to your med schedule. There are also sections for recording any number of things like pulse and blood pressure to weight, blood sugar, SpO2, pain, mood, INR, and more. You can add the information for your doctors to the app, and specify which doctor is prescribing each medication, making it possible to send reports of your meds or your manually entered measurements to yourself or your doctors. I’ve used this when tracking my peak flow and SpO2 for my pulmonologist, so they could more easily see how my asthma was responding over a course of specific medications.

Getting a new diagnosis of a chronic illness or a disability, something that has gone from “annoying, but transitory” to “here for the duration,” and all that comes with it can feel like you’re losing control of your life in the face of endless doctors, treatments, tests, and meds. Having a few strategies in your pocket for how to keep at least some of those things straight and as much under your own control as possible can go a long way toward giving you back some of that control. And, in turn, that can help you feel more like you can keep it together in other circumstances, because none of this is happening in isolation.

If you check the website for this podcast, you’ll find a full transcript of this episode, plus links to all the things we talked about today, and an example of my cliff notes medical history file.

Please, continue to join me here every month for a different topic and set of tips and tricks. You can find us on the web at http://www.sicktipsandtricks.com, on Twitter @HowToBeSickTips, and on Facebook at SickTipsAndTricks. As always, a full transcript of this and every episode is available on our website.

If this podcast is something you are interested in and want to see more of, please like and subscribe to us on your favorite podcast app and be sure to share us with your friends!

Episode 05 — Ehlers-Danlos Syndrome – quick tips with Eir and Laura

In this episode, we are going to be talking about Ehlers-Danlos Syndrome, or EDS. There are many types of EDS, but they are considered to be the same family of disorders because they all stem from the same cause: improperly made collagen in the body. Collagen is a protein that forms the latticework that everything in the body gets built upon, but it’s not all the same.

There’s 28 different type of collagen across several different genes, and each one has a different effect if there’s an error in the genetic code, resulting in a wide range of possible symptoms for people with some form of EDS.

We’ll talk about some of the most common symptoms and our top tips and tricks on coping with them.

Hello and welcome to episode 5 of the podcast Tips and Tricks on How to Be Sick.

I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us.

In this episode, we are going to be talking about Ehlers-Danlos Syndrome, or EDS. There are many types of EDS, but they are considered to be the same family of disorders because they all stem from the same cause: improperly made collagen in the body. Collagen is a protein that forms the latticework that everything in the body gets built upon, but it’s not all the same. There’s collagen in your skin, but it’s different from the collagen in the cartilage of your knees, which is different from the collagen in, say, a placenta.

There’s like 28 different type of collagen across several different genes, and each one has a different effect if there’s an error in the genetic code, resulting in a wide range of possible symptoms for people with some form of EDS.

These can range from relatively mild symptoms like smooth, baby-soft skin that might be extremely stretchy in some people, or easy bruising, or odd scarring, or joints that move too far or in directions they’re not supposed to (this is called ‘hypermobility’) or that dislocate completely or partially, sometimes without any kind of trauma or injury (a partial dislocation is called a ‘subluxation’).

To potentially life-threatening things, like heart and blood vessel weakness that can cause sudden, early death, or instability of the skull on the cervical spine, which can result in the brain actually sliding out of position. Please note that I’m using “mild” here as an indicator of “probably not going to require immediate medical intervention to save the person’s life” and not to say that the symptoms aren’t bothersome or painful or life-changing in many ways.

That huge range of potential problems is why this is considered a “diagnosis of exclusion” — meaning, a doctor needs to evaluate you and determine that your symptoms aren’t being caused by something else first, because having a correct diagnosis is critical to getting the right kinds of monitoring and treatment.

“But Eirenne, I have some of those symptoms; are you saying I can’t say that I have them?”

Nope, not at all! You can absolutely identify if your joints are moving more than they’re supposed to, or if your skin stretches more than most people, or if you bruise a lot, and you should feel free to use any tips or tricks we offer for EDS that you think will help.

But, just know that those symptoms can be caused by other things besides EDS, and it’s important to find out what’s really going on, so you can know how to monitor it and how to treat it. Remember how I said there are different types of Ehlers-Danlos? Each type has a set of common symptoms, some of which show up in some types, but not others. If you look at a list of symptoms and assume that you have one type of EDS because of it, you might be missing another type that could have the some of the same markers, but that needs a different kind of treatment or monitoring test.

“But what about blood tests? Can’t they just test for genetic stuff?”

Well, yes and no. They can run genetic tests — either blood tests or tissue biopsies — but they will only be helpful in some cases. Why? Because not all the genes that could be involved in EDS have been mapped yet. In fact, the type of EDS that I have, Hypermobility type (hEDS), is one of the types without a definitive genetic test available for it. There are tests for the more severe types, the ones my geneticist called “lifespan shortening variants.” That’s going to be stuff like Vascular type (vEDS), that can cause very serious conditions like spontaneous aortic dissection, where the biggest artery in the body literally pulls away and detaches from the heart.

For folks with that sort of serious risk, there are different routine monitoring tests that need to be done (or done more often) to find any problems as early as possible, because it’s pretty much always easier to successfully treat something the faster you find it, before it gets worse — or before it’s too late.

Basically, you know your symptoms and your body, but you probably don’t know all the possible causes of those symptoms, so only a specialist can give you a definitive diagnosis of Ehlers-Danlos Syndrome. By “specialist” I mean a geneticist or a specially-trained rheumatologist. This is a rare disease, and it can be hard to find doctors who know a lot about it. Most of my doctors only vaguely recognized the name when I was first diagnosed, and I see doctors at a major university research hospital! There’s a theory that this is more common than previously thought, because it’s hard to recognize, so there’s a push to get primary care doctors to identify the symptoms so patients can be referred to the right specialists, but it’s still not well known. If you suspect this might be a possibility for you, you could try my approach: print out the [NIH summary of EDS] and physically hand it to your doctor.

And, at least in the US, it can be an insurance nightmare if you don’t get a diagnosis from the right kind of doctor. Your orthopaedic specialist, your cardiologist, the nurse practitioner in your primary care clinic — these all might recognize some signs of EDS, but none of them can give you a diagnosis, because none of them will have the broad, specialized training necessary.

A production note before we dive in: the audio will fade out or become slightly garbled in several places during this episode. I apologize for the poor audio and would like to remind everyone that there is a full transcript available for any sections you find difficult to understand in the audio.

So, now that everyone knows what we’re talking about, let’s get to some tips and tricks for dealing with EDS.


Continue reading “Episode 05 — Ehlers-Danlos Syndrome – quick tips with Eir and Laura”

Episode 01 — Adaptive Coping Mechanisms – What they are and why you need them

Continue reading “Episode 01 — Adaptive Coping Mechanisms – What they are and why you need them”