Monthly Archives: July 2016

Damn Pride (vacation tips)


photo courtesy of

Going on vacation can be challenging with autoimmune issues (even without wrangling kids). I have learned that to have the best experience, I have to sink my pride. Yes, I do feel a little guilty when I see other people with disabilities who do not ask for or use some of the conveniences or features I do, but I do these things so I can have fun with my family – the cost to my pride is nothing in comparison. In fact, I use some of these conveniences in everyday life for the same reason. Quality time with my loved ones trumps pride every day.


My packing list consists of the same as most people – and then I add:

  • Medicine: everyday meds, standard prn meds (pain, muscle spasms, migraines, acid reflux, sleep, restless legs, sry eyes, dry mouth), and “vacation meds” (OTC meds for common ailments like indigestion, motion sickness, other vertigo, constipation, diarrhea, immune support, sinuses, cough, vomiting, sunscreen, aloe for sunburn, benadryl, neosporin, lip balm). And anything else I can think of on the way out the door that might be unique on that day – plus a rather robust first-aid kit.
  • Support: cane, wrist braces, elbow wraps, ankle wraps, knee wraps, thumb stabilizers
  • Food: meals and snacks for every day, even to carry into events and on plane given food allergies and other dietary needs
  • Drinks: water bottles (usually a case if traveling by car, if not, buy there), sports drinks (for electrolytes, may have to buy at destination), liquid flavors
  • and then just adapting the normal things:
    • Clothes: easy fastening (minimal buttons and zippers), multiple matches, extra underclothes, minimal needs (ironing, etc), sun blocking, layers, socks for support, compression, and minimal irritation (diabetic socks without toe seams, etc.)
    • Shoes: easy on-off, various heel heights, support (not that much different from others)(in fact, I rarely buy shoes with buckles to fasten)
    • Bags: multiple sizes and types for carrying stuff on the go, with multiple ways of carrying them (shoulder straps, backpacks, hand carry), 4-wheel rolling, etc.

But where the pride comes in is using a wheelchair at large parks, asking for the disability pass for rides (hard to stand in lines or up/down stairs), and asking for things in accommodation – not too far from elevator, can they use sheets without detergent or special detergent (allergic to many), asking for no cleaning chemicals (allergic to many), etc. (Note based on recent events: I do not ask for the haunted room!)

This vacation, I went to an amusement park and did not get a wheelchair or disability pass. I have been walking 12,000 steps a day and doing wonderfully. I thought I was well enough if I took precautions. I was not. About half-way through, my back, hips, and knees started locking up. I took it easy, used my cane, sat in shade, wore hat, took multiple breaks – and still no good. We had to leave about 1 pm because the body gave out. Had I sunk my pride, used the wheelchair, and got the pass, we could’ve stayed longer there, and I also would still have been able to function the next day.

I do get dirty looks from people (we’ve discussed that before), but pride goeth before a fall. I fell. Not literally this time, although it does happen relatively frequently given my balance and vertigo issues, but my issues ruined the day and I had been looking forward to this vacation for quite some time.

My advice is screw the pride. Determine what is most important for you – spending vacation with loved ones or being embarrassed by energy-conservation efforts?

This also works in daily life. I use the disability placard even if I feel okay, because 1) I may not feel okay in an hour (or less) and 2) it conserves my energy to use for other activities. Saving a little here may be all it takes to be able to go to supper with friends. And I do work to keep myself in good shape. Part of that is knowing where to bend before I break. I believe that learning to conserve energy and being smart now may mean that not only do I see benefits in the short term (being able to go to more events or be more active), but it also adds to my long-term quality of life. It cannot be good to lock up my back daily. Maybe if I prevent that, maybe the back lasts longer. I don’t know, but I believe.

So damn the pride! I choose to enjoy life, not pain!


Doctor cards 

Went to a new doctor today, switched to be an hour closer to where I live. 

Tip: always keep your doctors’ business cards. Always. And if you can remember to write the date you started seeing them, even better. 

My new doc wanted my records faxed over, but apparently I’d tossed a couple older cards at some point so I had no idea who had given my my HPV or most recent tetanus vaccines, and I didn’t have the records. Google helped me find one of the two doctors, thankfully- I had an older photo of my meds which had their name on a bottle stored in my email cloud thing, thank goodness. 

So take pics of your meds and keep them, so you have your dosages and Doctor names, and keep your doctors’ cards forever and ever. 

The freckles are under attack

So, I went and got a couple moles removed/biopsied a couple months ago because they were all 3D and were surrounded by a white circle, and hair growing in the circle was also white. I was concerned. The removal process was super easy, maybe four minutes for both of them, zero pain…. I can’t satisfactorily express how quick and easy this was. I was super impressed. A shot, a scalpel, and slice! Doneskies. 

Neither were cancerous. 

During the exam, which took like twenty times longer than the removal, the doctor/NP/whatever (it was a slice it off deal, I wasn’t concerned about degrees) mentioned “halo-ing”. Looking in the mirror just now, I noticed two freckles that are doing the same thing, on my shoulder. I’m sure there are more- it’s a subtle thing when you’re my color. So I did some research.

Halos aren’t uncommon, and are caused when your immune system randomly attacks your skin pigment, usually a freckle or mole. 

My life is the opposite of House- it’s ALWAYS Lupus. 

That’s not me, it’s just a google image. But it looks like that. Really are like little freckle halos, huh? But you never know which one could be not-lupus, so… Possibly welcome to skin biopsies for ever more!

Support system 

Last week, I was at a work conference for three days…. And it rained. Every. Single. Day. By day three, the last day, I was done, physically and mentally done. 

It’s so easy to baby yourself when you’re feeling bad. I’m more stubborn than the average bull, but even I have days where I tell myself “it’s only the last day, it’s even a half day…. It’s been raining three days straight…. I’ve been super active all the other days, I deserve this…. My body needs this…. I’m just gonna stay in bed…”

Fortunately, a friend at the conference reached out when she noticed I wasn’t there. She texted and called, very concerned, and (an hour later) I replied that I was feeling a little rough this morning but I’d be on my way soon. Ironically, her extremely understanding “oh no, that’s fine- take your time.” was the final straw I needed, and my pride got me out of bed and functioning. If it wasn’t for her, I would have missed the last day instead of being just an hour late. 

Don’t underestimate the value of a support system, by which I mean… It’s very easy to tell little white lies, to make up stories to cover weaknesses, and to shrug off concern. And I’m all for that, generally speaking, but for people in the know, who you trust to handle it right (which varies), be open and honest even with the little things. It helps. 

The next day, when I got home, I slept for ten hours, then took a five hour nap, then slept for another nine hours the next night…. This rain sucks.

Spoon Theory

I came across this theory a few years ago, after taking many different approaches to having Lupus and haging to explain what it’s like, this theory is the simplest way to do it. I don’t have the energy to do things that most people do, and that is okay, but most of my friends don’t understand. So for those of you living with an autoimmune or chronic pain. Disorder and are trying to explain, or those of you who have a friend or loved one going through this, take a moment to read and think about this theory. It puts chronic illnesses in perspective in a beautiful and elegant way.



- How much do you know?

at the Heart of Privacy

K Royal (@heartofprivacy)