After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.


Years ago, (post-sickness), life brought me a friend when I really needed their particular attributes, specifically their sense of humor and the manner in which they tackled life. My physical limitations were quite severe, and my endurance was worse. But, this was no longer new, so my life had adjusted accordingly. One long weekend, however, was unusual: my friend kidnapped me—with my mother’s approval after seeing a detailed itinerary.

 I had warnings that it would be coming, but I was certain my logical protests listing the numerous reasons of my physical limitations, made the idea ridiculous over the previous weeks and proclaimed a guaranteed deterrent. My reasoning was nothing against my friend’s determination, and we went places where we could have fun; my concern was the toll it would take on me, and therefore him, my friend, handling me when my body had quit. He brushed it off, Mom approved, and I was over ruled, and thus kidnapped.

The adventure was like a dream: whatever I really wanted to do we figured out a way to achieve it.

 We both understood it was a one-time deal. To use a cliché, we went for broke. Like I said, we had fun. Since he could pick up me and carry me, lay me on the ground when I needed rest from my chair, etc., I was able to go places more easily than my mother or nurses could take me. My body still gave out, but somehow after the rests, we kept going.

On the last evening when we were back at my house, I had ice-packs all down my back and legs. I whispered, (as my breath was shallow from the exertion), my thanks. He, then, proceeded to count all of the lifts he had given me and approximated the distance he had carried me, all while rubbing his own sore shoulders. I should have seen it coming, but I didn’t. If he had thrown a glass of ice water at my face he wouldn’t have surprised me more. It was like being handed the bill at the end of the evening when you thought you were the guest, not the host.

It’s not that I didn’t know all of the lifts and transfers would have a toll on both of us; it’s that I didn’t realize I would have it thrown back in my face. I certainly would never—and did not—count how many full body spasms, agonizing hours of constant leg tremors, spine crushing moments I had endured over the past three days from our jaunts. Nor did remind him that I had thrown up the night before from exhaustion.

I apologized—what else could I say?—but he didn’t accept that. He wanted me to simply acknowledge what he had sacrificed too. In the end, it pissed me off. Mostly because now when I remember what had been a really fun weekend it is always under the shadow of those words.

I share this story not to make anyone either angry or to feel pity—only to use it as a literary foil for my family, my extended family.

As I shared in the last blog, I was getting ready to go to my sister’s wedding. Well, I went and the most important thing happened: my sister was a radiant, giddily happy bride. Second to that, my family, as usual, went above and beyond so that I could enjoy and endure as long as possible. Never once did they accept my “I’m sorry…” (those make them angry), and “Thank you”… (those they blow off).

And that makes me blessed.


My family,

as usual, went above and beyond so that I could enjoy, partake, and endure as long as possible.

My physical needs and limitations were considered throughout the entire wedding planning decisions. From the location of the venue, so I could be there, to the decor. There was not only to be a couch at all celebration times, but my sister made that the center of her design, and then incorporated multiple couches at the reception so that I was not alone but part of an ensemble. The wedding planner was instructed to not only see to the bride’s needs, but my needs as well. That’s just one of many, many, many, examples. Another is one of my dear friends, my Watson and co-medical guru, who arranged her work schedule so she could take the days off to accompany me and let my mom be mother-of-the-bride. This gave my mom the freedom to not have to be my primary caregiver or worry if someone could handle my medical needs without her there. During the actual wedding, my cousins took over, and with Watson, lifted me up and carried me to and fro as I needed to rest outside of the reception.

Whatever I needed, there were at least two (more likely four), people to help. And, just like at my other sisters wedding (as I have two beautiful sisters), the groom picked up me and “danced” with me so I could partake—which was so much fun. At the end of the evening when I wanted to see the bride and groom leave through the sparkler send off, my cousins found out and carried a couch all the way to the end of the line, and then came back and carried me there.

It wasn’t just my blood-related family either. So many of my sister’s friends helped if they saw a need, and the groom’s family embraced me like my own.

Not once in all that time did anyone point out how sore I know I made their arms and backs; how I unintentionally interrupted their meal when I needed to leave when they were eating; how it looked like I “held court” as anyone who wanted to say hi had to come to me, and not vice versa; or throw in my face about all the accommodations that had been done solely so I could partake.

 In short, everyone’s loving embrace of my physical limitations to see to my needs, and never making an issue about it was nothing less than soul-nurturing. Especially as once I was situated, we all joked and talked as if nothing unusual occurred. That means more than the deepest, most humble, “thank you” can ever say.

Hence, why no matter how frustrated or hard some of my limitations might be, I can never define my life as anything less than “blessed”.

Oh! If you’re wondering, Camelot, the #1 service dog, looked very dapper in his green bow tie and was appropriately adored by all.






Traveling Bags, Priorities

Traveling Bags, Priorities