Recovering

I have been out of commission for over a week.

A Flare.

It is unpredictable, life-altering and never the same. With my disability, the possibility of a flare is always around. The last flare sent me to the hospital in 2008 for a week. This flare was/is just as difficult, because it dried up everything about me. My kidneys weren't functioning well, my back and stomach cramped like a stampede running throughout my system and my fever hovered just high enough to send my equilibrium into a tail spin.

An auto-immune disease is like no other condition I have ever researched. It isn't always visible, but when it comes at the patient full-force, it is difficult for the outside observer not to see that something is very wrong.

Even typing on the keyboard at this moment is excruciating, like my joints are crumpled together and my muscles are fused to the bone.

In a strange way I am also grateful for the days that I am in poor health. These days are the ones when no outside observer questions my handicap parking pass, my need to take elevators, my pain prescriptions and my other necessary accommodations. Days when I do have a flare are easier to explain to colleagues and strangers rather than days when I look "healthy."

I wonder if this is true with other "non-visible" disabilities. Do they all have the challenge of explaining their accommodations when not in a flare compared to days when the disability is clearly at it's worst?

Cruising with boundaries

Recently, my husband and I returned from a week's vacation on a cruise ship.

While eating breakfast one morning, I noticed a newlywed couple taking their seats next to us. The groom's wheelchair easily coasted between the ample space amongst the dining room, but it did spawn a thought in my mind as to whether or not the rest of the ship was just as accommodating. As I finished my breakfast, I noticed a second level to the dining room, in case the lower level became too crowded. This upper level was only accessable by staircase.

Next, we checked into our 122 sq foot ocean view room that was a mid-sized cabin for the ship. I had difficulty getting myself and my carry-on bag through the door. Yet, alone be successful in finding a spot to store everything. (1 bag- that is all I brought). Immediately, my husband and I had to return to guest services and require an extension cord so that he could use his C-PAP machine at night. It only took 3 separate requests and 6 hours, but eventually, we had power.

Throughout the rest of the trip, I took notice of all of the points on the ship and surveyed as to whether a cruise was really a great trip for all. All being an inclusive term for those without disability or accomodation.

Elevators were only available at the center of the ship, staterooms were extremely difficult to maneuver within unless you paid extra cash for the suite upgrade and transit to your daily destination aboard a tender boat involved steep staircases and bleacher-style metal seats.

I suppose the most frustrating concept of all within my non-chalant investigation of the cruise ship, is the fact that the ship went through "extensive" upgrades 3 years ago. Carpets were replaced, bathroom tile was updated, higher thread count sheets were added, but they forgot the ramp that would allow the newly-wed couple to dine in the upstairs room.