4 Tips for Being Adventurous With a Primary Immunodeficiency Disorder


Live music, tattoos, heels and makeup – these are a few of my favorite things. However, I have a primary immunodeficiency disorder, which along with the lack of a functioning immune system, comes a host of symptoms that make being spontaneous impossible, but being adventurous doable. Well, doable if I prep and remember some hacks I have picked up a long the way.

First things first. Live music runs through my veins, meaning it is as important to me morale-wise, as my treatments are health-wise. It can be difficult to be able to attend concerts from the germy folks spreading sickness, to the long hours and crowds which kill your energy, or the car rides to get there which enhance nausea. Most important, there is the risk of bonfire smoke outside and fog machine smoke inside, which both trigger my severe chemical allergies, which end in asthma attacks. Not to forget to mention there is the anxiety that builds prior to the show, because you are worrying about all of this. I sound like a barrel of fun, don’t I? Well I should, because I am super fun. This is because I have some ways to deal with these issues that make a live music show from time to time completely worth it.

1. Someone from your inner circle must be attending these events with you. This is firm. It may sound finite, but that is because it is the most important point I will make. Why? You may ask. This is because when you begin to panic, have trouble breathing, need someone else to subtly notice smoke is rolling your way and move you, need to sit in the front seat of the car every time, or if you have a complete emergency, you will want someone there that knows how to deal with all of it and help you. And you will have someone that understands that when you say, “We have to leave,” that it is real and not up for negotiation. Also, this person will know how to contact your family from the emergency room if it comes to that. This person will also help ease anxiety in general, because you have a partner in crime there with you.

2. You must make a short list of items that are always with you. This means that your partner in crime will know you are making a shopping stop if you forget any of these required items. My items include my rescue inhaler, a mask for chemical triggers in the air, germs, nausea/motion sickness medicine, other required medicine and a list of prescriptions in case there is an emergency, a water bottle, my insurance and ID cards, a charged cell phone, nut and fruit mix, flat shoes to trade out heels, and an optional book to read in waiting rooms. Having this list checked off before you leave the house will make all of the difference with feeling less anxious.

3. Plan for the event to be on a day when you will have at least one full day of rest available afterwards. Now some of us will need more than one day, but you can gage for yourself how many you need. I like picking Friday evenings, that way if it wipes me out, I can rest for the weekend and go in for an infusion if need be on Monday. Again, this will be different for everyone.

4. Once you are all prepared, sitting in the front seat of the car after taking your medicine, put your feet on the dash and trust this process. You have taken the precautions and are ready to have fun! Lose any lingering guilt you feel for risking a bad health day as best you can. Many of us have that guilt, but realize that you are still a person who loves life and has interests and wants to be entertained.

I promise that these things become second nature, although they may seem like a lot to bother with just to go do something for fun. But, they keep my spirits up during all of the treatments, doctor’s visits and bad health days.

You deserve to go out into the world and be adventurous! Well only on a good health day when you feel up to it, of course.

Now go have fun.

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