I Want To Travel

I have been an advocate for my diseases for many years now. This has given me the opportunity to travel to more than 35 states. I love traveling; it has given me the opportunity to do things that most people dream of doing.

Making sure all your medication is ready

One of the things that I have noticed over the years is that traveling wears me out. It can be stressful, especially when you must carry medications and worry whether or not they are safe. I am on a biologic, so I must make sure the medication is stored properly. Make sure you have enough medication with you; this will cause major stress if you run out and can’t get a refill. I have started sorting pills in pillboxes to help me with this. This can be physically and mentally draining at time.

Make sure you know where the nearest pharmacy is and a local hospital. You will probably never need it, but it will give you peace of mind.

Making a travel checklist

If any of you have brain fog you will understand this next paragraph. I have to check and re-check that I have everything that I am taking with me. Medications, computers, phone cords, plane tickets. I get up extra early so I can get ready in time because I have no idea what will be going on with my body that morning. Will I be in pain or not?

Giving myself extra time

There have been a few times that I have missed my plane because I just wasn’t fast enough to get to the terminal. There are some airports that are so big that it would take you 20 minutes to get to your flight. This is not good for my joints, especially if I have luggage. I have learned to check in that bag no matter how big or how small the luggage is. This has saved me a lot of headaches.

Coping with joint pain on the plane

I know that for me I don’t care how big the plane is, after a few minutes the pain kicks in. My back, knees, legs and arms hurt. I don’t like sitting in the middle seat because I know I will have to go to the bathroom more than once during a short or long trip.

Planning transportation to and from the airport

My status has changed some now, so most times I have a driver who picks me up at the airport. There have been times where I have had to wait for buses, call cabs and just be miserable to get to my destination. I remember once getting off at the wrong stop and having to walk 10 blocks.

Managing fatigue

I have never had to cancel a photoshoot or event for any reason, but there have been times when I am drained and feel like I can’t go on. I am very fatigued.

Most of the places that I go to are very plush. The best hotels ever. The only concern I have is that what if I overslept, can’t get up from being fatigued, or if I get sick. I have days where I can’t get dressed by myself. I’m thankful that most places let my caretaker travel with me now.

Catching up on rest when I get home

When I do arrive home it’s rest, rest, rest time for me!! I have a great time traveling, but it can be mentally draining especially if you are doing a 3 or more-day event. I love what I do, and I love helping others, but I can get exhausted, tired, and beat down, but this is a small price to pay to help others and eventually help find a cure.