SmartAss ProTips: Your Med Backstory

I want to have some resources here for you to use if you want or need them. While writing a piece on Go Bags, I realized that I had not talked to you about putting together a basic medical summary. This is the first thing you want in a hospital/medical BugOut/BugIn bag, or any travel bag for that matter.

Nissi (a black pitt) and Lucky (a tawny Chiwowow) keeping the neighborhood safe by sniffing a suspicious tree.

We will get into what Go/BugOut/BugIn Bags are, why you may need one, and a guideline of things to consider when making one. But before that, and Go Bag or not, you should have a MedStory!

MedStory is my own term for a unofficial medical history. Anything written my you will be considered unofficial - remember, patient reporting is considered the least reliable source of information around by docs, etc - but that was before "fake news." 

Even if you are not doing the whole Go Bag thing, you should do this. Even if you are healthy, you should do this. Keep a copy in your bag, in your car... You know your life best, so keep it where you know it can easily be found in an emergency. Since this will be too big to fit in the typical wallet, a note near your ID that indicates where your history is stored could save your life or the life of someone else if you are a organ donor.

I am going to give you what I think would be useful, and you can use or change it as you see fit for you and your family. We are going to cover information personal, medical, and medicinal. If you have a suggestion to add, please comment below and we will all benefit!

When you write your medical summary, imagine the conversations you normally have with medical professionals, only this time they need to know and you are unconscious with no family or friends present. There is a lot of information to think about here. You do not need to let yourself be overwhelmed by it. Take each suggestion one at a time. 

Ideally, you will have a summary for each family member. Even if you are around for your spouse, kid, or parent experiencing medical distress, this stuff is stuff you want to just hand off and not worry about - you will have enough worries.

Start with the basics: your name, address, phone numbers should be at the top. Another very important piece of information is your emergency contacts: their names, addresses, phone numbers. Who is your next of kin? Who is authorized to receive and act on your medical information? Do you have Advanced Directives (also called DNR orders). Do you have a medical power of attorney? You should have a copy of that in here, along with a notation of the location of the original, should it be necessary. Are you an organ/blood/marrow donor or on a registery?

While the rest of your medical information is covered below, next you should list your allergies, whether you think they would be an issue or not. Example: an egg allergy could really mess you up if you are given certain vaccines. So list them all is my advice! Make a note of each allergy & severity. Iodine makes me itchy, but penicillin will kill me.

You also need to mention any conditions, illnesses, or whatnot. Some people will list psychological diagnosis, and they can be important, but others are not willing to disclose them without establishing, personally, that it is pertinent and that they feel safe doing so. Sometimes an illness can be figured out by the meds you take, but do you really want people guessing at that moment?

You also want the names, addresses, and phone numbers of any health care practitioners you are currently seeing or have seen recently (last couple of years). If you have seen a specialist, you will always get asked why you saw them, so list that too (example: saw a pediatric gastroenterologist for stomach pain that resolved on its own or a physical therapist for SI joint dysfunction that improved with a completed course of PT). 

Now you need to detail what you are normally putting into your body. List any over the counter (OTC) or prescription medications you take, no matter how innocuous it may seem to you. If you take ibuprofen for occasional headaches, they say so. Please keep in mind that many prescription medications are used for more than one application, so list the reason you are taking it. Also list any herbal or homeopathic intake. 

I want to say if you are taking anything illegal, you should put it here because sometimes your docs really do need to know, but you have to make that call for yourself. 

So that is a good start. I will update this article as experiences or conversations make me wiser. If you have a tip, let us know below! I am considering making a Google form or something, what do you think?

PatientC Manifest

Welcome to me: the me before I even get up, the base physical me, the challenges in my day, and what I conquer, compromise, and coddle to get to you, Dear Reader.

There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.

The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)

These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.

Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.

In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.

About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).

All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.

Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.

I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.

I think I am almost done.

I have been hypoglycemic for two decades, controlled through diet. 

I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself. 

I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old. 

I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.

I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable. 

I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.

I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still. 

Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.

And the migraines. Wow, the migraines sometimes...

Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.

(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)  

If Self Improvement is Masterbation...

I have not written much about me personally lately. I shy away from that sort of thing when I am stressed. So here is what is going on with me and mine for the folks that are interested. All of this is happening with tons of help from the family, particularly the Menfolk. I would still be splashing in a miasma of good intent, stalled efforts, and drama without their support.

Umbra does not care if this post gets finished.

So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one. 

"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!

My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things. 

For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.

I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope. 

We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.

We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.

I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.

So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!

Seeing is Expensive OR OneSight

Wearing eyeglasses can be a tough gig. A lot of insurance coverage either does not cover visual, or barely covers it at all. Of course, while you can spend an absolute ton of money on a pair of eyeglasses, even cheap ones are prohibitively expensive if you are poor. In Indiana, it costs anywhere from $100-$200 to get an exam, lenses, and frames.

Going without glasses causes  obvious problems. Wearing old glasses can wreck havoc with your health and comfort if your eyes have changed significantly since you wore them. This can cause migraine like symptoms in some. In general I have never known a person that needed to do this that did not have headaches of varying degrees that did not relent while they wore their old glasses. That was a messed up sentence, but I trust that you understand what I wrote there.

The cost and logistics (multiple trips, hours that are one's working hours,  gas or public transit twice) along the the shitty "coverage" if you can even get that; all these things make glasses really hard to get once you live at a certain income (or lack of it) bracket. Groups, charities, and other organizations that help people get glasses do a tremendous service. I have written here before about how you can help by donating your own old or extra pairs to help the cause.

A few weeks ago, I went with the Boyfriend to a local Lenscrafters, as he needed new glasses. While we were there I picked up a brochure for OneSight, an organization that brings eyeglasses to those in need. Unfortunately, you cannot just go in with whatever proof you have for your lack of income, you need to be referred. But the program looks great, and works both internationally and domestically (US). They are also one of the programs that will take your old glasses, too!

I think OneSight does good work, and I wanted to pass the word along. Do you know of other groups and/or efforts? Please share them below!