Self-Accommodation and my Emergency/First Aid Kit

So, a few months ago I started writing this post and just got around to finishing it and posting it now. Since then, I read a similar post: Yes, That Too: Accommodating Ourselves which you should also check out, it is great, and it covers a lot of the same stuff. The main difference is that their post is mostly social related accommodations of sensory stuff and I add some the biomedical type accommodations and accommodation needs. 

Everyone has their own personal things they need, but these are mine. 

TW: Minimal blood and skin picking 

I bring a basic First Aid Kit with me basically everywhere. Days like today it is both essential and still incomplete. I also carry what I used to call my “aspie kit” (see Lydia Brown’s post as to why I stopped calling myself an aspie (The Problem with Aspergers ) and now generally just call my “emergency kit” with me everywhere. Both a first aid kit and an “emergency kit” can be essential for many of us and can be either one or two.

My “emergency kit” is usually kept in a regular inconspicuous pencil case. 

My first aid kit at the moment is in a Ziploc bag at the bottom of my backpack. I haven’t needed it in a while, I’ve been pretty careful and when I haven’t I’ve usually been able to bandage at home sufficiently.

Emergency Kit:

• Bag/Case: I keep mine in simple pencil cases (the big kind with 2 zipper pockets, not the skinnier ones). I like that because I can pack it in my backpack and it comes with me everywhere. I don’t have to think about it and it keeps me calm knowing. When I have to go somewhere nicer, I can usually fit it into a purse type thing. If it is a really nice thing I can take some of the things out (or extras of those things) based on the type of event. If someone is more femme than I am I’m sure you can use a nice clutch for this kit or some type of make-up bag which can be put in a purse. One of the important things is that I like to keep it together and be able to just pack it in the bag along with my phone, wallet, water bottle, and whatever else I’m bringing and not have to constantly be thinking “what if I need X!” and then running around frantically trying to account for every scenario.
•  Ear plugs: I buy reusable ones and keep them in their handy case and bring them with me almost anywhere just in case. Disposable ones are okay but not worth the money or environmental waste in my opinion. 
• Tissues: for obvious purposes as well as for when I pick at my skin and it bleeds too much (their usual use with me)  
• Chapstick of some kind:  I keep at least one with me all times if possible. In the winter especially. I lick my lips constantly in the winter and get HORRIBLE chapped lips which crack and bleed and I pick at them and they get infected and it is a bad thing. So, I usually carry a mini (e.g. 7g) thing of Vaseline with me and a small lip thing (that looks a little more normal is still for chapped lips and not a lip gloss) as well.
•  A stim toy: obviously stim toys are the best. I often carry more than one but I try to keep a small one at least in this so that I can bring it. I have a mini slinky and a magnetic bracelet usually. Magnetic beaded bracelets (that look like these, but ignore the rest of the website) are a wonderful way to bring a stim toy to something when you need to look like a grown-up!
• Meds: Any meds that I need to take either as needed or a few times throughout the day I keep extras of here. Specifically, my anti-anxiety meds and at least one type of painkiller are a must for me. I usually keep my inhaler here in case of asthma problems too

Miscellaneous Other: 

• Aromatherapy: I personally really like the Bath & Body Works “Stress Relief Instant Aromatherapy” roll-on  (no produce placement or endorsement, I bought it and I like it and I didn’t compare to any other products). It is small and smells nice and does help calm me down a little bit. This is me as an Autistic disabled person, not as a nurse suggesting this since as a nurse I know nothing about aromatherapy's medical benefits etc.
• Auditory relief: I keep my headphones and ipod outside of the kit because I use them all the time but headphones and some type of music player are definitely great kits to bring along everywhere  
• Edible: I usually try to keep some type of protein/energy bar in there just in case I really need a snack and I’m getting grumpy and stuff. I also personally keep tea in mine sometimes. I am particular about what kinds of tea I like and find that knowing I have my own is useful.
•  Menstruation stuff: for those who menstruate having an extra pad/tampon/menstrual cup can be great to keep with this stuff so you know you always have one on you. 
• I often also keep one or two first aid items with me in this kit in case I don't bring the full travel first aid with me everywhere 

First Aid Kit (travel- I have a massive first aid kid that I keep at home)

• Medical tape (paper): also useful sometimes for fixing broken jewelry, pretending it is scotch tape, and a whole bunch of other things. I buy the paper kind because it is less irritating on the skin and just more comfortable for me. I used to buy other kinds of tape and then I’d wind up getting a rash from it or just itching at it and then I’d have to get a bigger gauze pad to cover that irritation on top of the actual injury and it would just be a disaster.
• Gauze Pads (individually wrapped): I usually keep at least one large (~4x4 inches) non-stick gauze pad in there just in case there is some bigger issue. Also, sometimes I have to re-bandage an injury that needs something that big. It can also be good as a sterile pad to wipe a small but bloody/messy injury or wash it off.  
• Antibiotic ointment: neosporin or something like that from the store. Sometimes you can get free samples of individual little packages of them from medical places or store purchased first aid kits. 
• Band-Aids (regular and dot for me): I only buy the sensitive skin ones (see above for tape). I get the regular basic size and the dot size and bring a few of each in my travel kit. The dot ones not everybody needs but for me they are especially awesome because as I have mentioned I am a skin picker and the dot bandages tend to be the perfect size for a lot of the tiny little spots I need to cover from that and they are less conspicuous than regular sized and stay on weird surfaces better.
• Alcohol pads: I bring a bunch of these with me. They are good for a whole range of things not just first aid.

Pain

I was discussing this with a few friends the other day. Autistic pain and neurotypical pain, and well, everyone's pain, is not the same. The other day I was told something would be VERY painful, but it wasn't. It was however VERY unpleasant and INTENSE, but not really too painful. These are different sensations and they make a BIG difference to me in how I prepare mentally for them. 

At the physical therapist or the doctor, I'm asked to rate my pain on a scale of 0 (or 1) to 10. Sometimes, it is merely a binary- pain? yes or no. 

A lot of the time, the questions have to do with what KIND of pain. 

For example, WebMD asks; Q: How would you describe your headache? The possible options to this question are: 

1) sharp or stabbing

2) dull or achy

3) burning or stinging

4) pressure or fullness

5) throbbing

6) none of the above 

I'm often at physical therapy and can't describe the sensations. It is tenderness and discomfort, but not exactly pain. There are just so many ways we can feel things, so many unpleasant ways, and so few words we know how to use for it. The types of analogies we use are also lacking. 

Then, when you get to autistic descriptions of pain/discomfort to NTs it is sometimes just totally baffling and impossible to communicate. 

I read this excerpt from the wonderful magical and highly highly acclaimed (by me) anthology, Loud Hands: Autistic People Speaking which pointed to some of this.  

"When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed"  (Bascom, Julia. "Quiet Hands." 119). 

Certain things HURT us (autistics) that aren't physiologically supposed to be related to pain. It is very complicated and confusing and there is just a lack of terminology for talking about how our bodies feel. I have noticed through physical therapy that in general I don't know the right words for the right feelings. I know good or bad and painful or itchy but I don't really know how to explain to a non-autistic what it feels like, really FEELS like to sit still for too long without stimming. Or to explain what it feels like to have to eat the wrong kind of foods. 

I think it would be great to have some way of comparing feelings and sensations that we feel and understand and know about ourselves to the more traditional and medical and NT ideas about sensation. 

I don't have ideas. Just thoughts. 

Why I want to do what I want to do

[trigger warnings for all of the mentioned articles about ableism, abuse, neglect, and general lack of respect for the lives of people with disabilities]

Most people do not understand why I would want to focus on people with disabilities in a medical practice. 

The LGBTQ part some people understand or just realize they totally don't understand and let it go. However, most people assume that the medical realm, doctor's offices, hospitals, etc is THE place that caters to people with disabilities. So why on earth would you need a special place?!

Well, Doctors Turning Away Patients With Disabilities - Disability Scoop Just because a place is medical in nature, does not make it accessible. 

And then you get articles like this: Doctors put lower value on lives of the disabled, study finds - Telegraph

Of course there are also many many articles about this case "Woman claims hospital restrained autistic son, left him to suffer" [Trigger warnings for: medical neglect, abuse, graphic images, and restraints]. 

And of course not being allowed organs: Disability Bias Clouding Organ Transplants, Report Finds

I could of course go on and on and on for hours. I don't want to though. I can't. It is too upsetting. It is simply unacceptable. 

I should not have to do anything special to be a medical provider for people with disabilities. It should be the norm. But it isn't. It makes me furious. However, being furious doesn't do anything if it doesn't lead to anything. So, here I am. Overworking myself with prerequisites so that I can start nursing school in a few months. Hopefully, one day I can try to make a difference for at least some people. I would like to not have to. But, until then. I will just be furious and try to make something worthwhile out of it. 

respecting patients while utilizing and appreciating the knowledge of caregivers

Summary:

• I want to work with patients with disabilities
• Some of those patients I'm sure will be non-verbal
• This does not mean that I don't want to 'hear' what they have to say
• It just means that the process is more difficult
• How do I best do this and while respecting the person and their agency but without sacrificing their level of care? 

Long fully explained version:


So, in a few months I start an accelerated nursing program to eventually get a masters (probably a doctorate as well) in family nursing practice. One of my goals as a future healthcare practitioner is to be as disability inclusive as possible.

I have been thinking about these issues a lot recently and brainstorming what sorts of things are involved in making that a reality and what things will be practically necessary to plan for. One of the big things that I am embarrassingly ignorant about is methods of communication that differ from my own.

Specifically, I have been thinking a lot about the issue of consent and the ways that I personally think consent and discussions about medical practices and healthcare needs to be much more of a conversation with patients. I really want to be able to engage with my patients in actual conversations about what their goals are in care and what their main concerns are as well as make it an environment where questions are encouraged.

Basically, I have been thinking about how to handle this issue of consent and patient involvement in their medical decisions when applied to patients who have communication styles, methods, and amounts different than my own or others I'm more accustomed to.

I would like to respect my patients as individual human beings with thoughts about their own lives and address them as such. In thinking about what I knew on the topic of respecting people in these situations one of the big things that I always hear is to always direct questions and look at the person and not their caregiver. This makes sense to me, but as a frequent patient (who is Autistic) and as a future medical provider, I think that applying this too rigorously limits the level of care I can provide.

As someone who has dealt with a lot of medical stuff personally I have often found it exhausting to repeat the same stories and lists over and over again. I also sometimes get overwhelmed and am less comfortable talking to strangers etc. So, sometimes I find it really a lot easier to have my mom or other caregiver type person with me answer the majority of questions and then I can correct/add as needed. Also, apart from me, these are the people who are the experts on me.

The burden of doing all the work dealing with medical situations is often too much for me alone and needs to be shared, I think this is probably true for Autistics who communicate differently than I do. Also, I think that good caregivers/support people should be utilized for their information about the person's basic medical information as well as how they can best communicate and be comfortable around me. I want to acknowledge and take advantage of the wealth of information  and support that loved ones can provide without minimizing the respect and agency that the patient deserves.

Additionally, I think that effective health interventions with patients require a support network. Not that I can think of off the top of my head health interventions, but even for example a complex schedule for taking a certain medication. It is hard to remember all the instructions and if you write it down then you can lose the paper etc. Then you have to remember to get the paper and figure out how to implement that schedule and incorporate it into your life. So, for people who utilize other people in their life for daily activities, scheduling is something they need to be involved in discussing to get the person to take the meds.

I know that I have a LOT of trouble incorporating new physical therapy activities into my schedule. I don't have good supports for helping me with managing my schedule and routine. So often I just forget to do my physical therapy. Then again, in the types of situations when doctors don't fully explain things to me and I only get simple instructions for a referral or procedure and it wasn't explain to me, it is really frustrating. So I want people to be part of all these conversations but involve the people who should be there. Not to mention that all of this can be totally overwhelming and WAY too much to deal with at a visit with your medical provider and expecting too much from a patient and overloading them isn't good either.


**Sooo, yeah. That was really rambling as I'm sure you will all (if anyone is reading) get used to. I think most of my main points are sort of clear. I would love responses/comments/suggestions either in the comments section or via email (cripradicalnursing@gmail.com). I would love to hear from autistics on what their preferences are in these situations and how they navigate them as well as from parents/caregivers about how they navigate these situations and advocate for their loved one and ensure that it is with the consent of the person. **

Welcome

Hello whoever is reading this,

I wanted to welcome you to my blog. I should be doing homework right now but I have to take a break to reduce the massive level of anxiety I'm feeling.

I started this blog because I realized there is a lot of pontificating and venting I will need to be doing (even more than usual) once I start graduate school. I was accepted to a joint program to get certified as an NP and get an MPH. That means, I will be doing an accelerated program to do a Bachelors of Science in nursing (for people with a BA in another field) which takes about a year and then the same program I would be continuing to get my Masters in nursing. Then during this there is time set aside for me to get a masters of public health as well (all in the same university). It is about 3.5 years for all of it if I just do those programs. If I continue and get a DNP (doctorate of nursing practice, the clinical doctorate degree for nurses) that would add another 2 years.

I'm a feminist, vegetarian, queer, pansexual, cisgendered, Jewish, white, Autistic, physically disabled (yet not visibly so), geeky female. I hate ableism, racism, transphobia, sexism, and all that other stuff. I however also really love biomedical sciences and public health. Being part of the medical industrial complex while still using phrases like the medical industrial complex is really difficult and requires a certain amount of cognitive dissonance. Additionally, being white, passable as straight, passable as able-bodied, and cisgendered means that there is a lot of privilege I have in that institution which I'm really uncomfortable with given the communities I want to work with and care about. I want to work with the LGBTQ communities and disabled communities primarily. I essentially want to work with those people who are told that they are too abnormal for doctors to understand how to treat them and that it isn't worth their time to try. I want to take that time.

Already, reading the list of competency requirements I'm curling up inside myself to compartmentalize and find a way to deal with who I am and who I must be in order to succeed in graduate school.

So, to anybody reading this...I hope your night is less stressful than mine and I will speak to you again soon.

-Me