Building Your Support Dream Team
Living with psoriatic arthritis requires teamwork and I am not just talking about a team of doctors either. Your team should also include members who can assist, encourage, and comfort you. With a good team, life doesn’t fall apart when a flare or unexpected complication arises, instead it temporarily changes.
In addition to doctors who are able to help you manage your disease and pain, you will need to draft people to fulfill the roles that you aren’t able to do while hospitalized or severely flaring.
Every good team has players waiting on the sidelines to take over when the star needs a break. Do your team a favor and have a bench full of backup players ready to hit the court at a moment’s notice. The last thing you want is to constantly play the same players. Overuse will lead to burnout and eventually, they may quit the team.
Another reason for needing backup players is that the ones you regularly call or rely on may not be available. For example, my husband has accompanied me to every emergency room visit except for two. He was traveling for business during one and had to get a few hours of sleep before work the second time.
Now before you think his needing sleep while I was in the hospital was selfish, by the time we decided to have him go home we knew that the ER wasn’t going to do anything but treat my pain. We also couldn’t afford to jeopardize his job, as at the time he was the sole provider. This also occurred over a decade after chronic pain and illnesses took over my body.
At this point, we were pros and knew what to expect for the rest of the night. We also knew that the ER can’t be trusted and that it was important for me to have someone to witness and watch to make sure they didn’t administer anything that I am allergic to (yes it has happened in the past). We called a friend who was familiar with my situation and had her spend the rest of the evening by my side.
To continually throw slam dunks and not fouls, you need to prepare your team. Having their permission to be called into play is just the beginning. Educate and train them to care for you in case you are unable to speak for yourself. Have a list of your medications, conditions, symptoms, and allergies available for them to refer to. Make sure they know your blood type and anything that might make a difference in receiving emergency care.
For those who may be providing meals for you and/or your family, make them aware of food allergies/sensitivities for everyone. Be sure to notify schools of people you have given permission to pick up your children in the event you are unable to.
You may think it is a bit overkill to prepare to such an extent, but trust me, when needed you will be glad that you did!
How do you plan to recognize PsA Awareness Month?