Tuesday, March 06, 2007

A Happy Queen

Wow! What a whirlwind. These last few days have been amazing!

To begin, I woke up on Saturday morning and felt a weird sensation in my body. It is hard to explain...sort of a buzzing up and down my arms and legs. It didn't hurt and it only lasted about an hour or so.

The next thing I know, I am doing small chores around the house. I wasn't dragging my body...I wasn't in horrible pain...and I was singing! It took me awhile to realize that I was feeling pretty good. Dare I tell anyone else and jinx the morning? It had only been less than two weeks from my last Rituxan treatment and I knew something was happening. And I had a big evening ahead of me.

I rested part of the afternoon in preparation for my grand entrance into the ballroom. You see...that night I was to be honored as "Queen of Mardi Gras VI." (There is also a King...but honey...this was my night!) I was looking foward to the party for months, unsure of how I would feel on March 3. But here it was, and I felt terrific.

That evening I got all dressed up...and there...right there on Montauk Highway in Patchogue... I emerged as the Queen of Mardi Gras at the West Lake Inn. Plush velvet cape, gold-beaded crown, plastic jewelry--the works! I even had the "Queen's royal "wave" down pat. (as you can see in the photo!)

From the moment I walked into the place, I was treated like true royalty. There stood a VERY large photo of me right outside the ballroom. As I strolled in, people bowed down and kissed my hand! OMG!!! My "crewe" soon followed as we entered into the room. About fifty people had made an archway with their hands for me to go under until I reached the stage.

Once inside the room, I was overwhelmed with the applause, camera flashes and screaming that filled the air. I looked around at all the beautiful people...my friends, acquaintances and strangers...while thoughts of what got me to this moment crossed through my mind. All the years of working with the GLBT community on Long Island in PR and music...culminating in this wonderful honor!

Highlights of the evening included 106.1 BLI morning show celebrity Randy, hosting the evening and asking me to pose for a photo with him which will be included on the radio's website. I was interviewed by an independent filmmaker who is doing a documentary, but will be using parts of the segment for a show which will be aired on cable in June.

Oh yeah...Martha Wash...yes "the" Martha Wash sang "It's Raining Men," "Strike It Up," and "Sweat." I stood right in front of her the entire time. And after her show, she only agreed to take three photos. Guess who posed with her for one of those photos? (I don't have it now, but will post it soon!)

I danced my tushy off all night. I have no idea where I got the energy. Probably from all the postive energy in the room...a room that was filled with love. It is a night I will NEVER forget for the rest of my life. One of the best night's of my life.

Of course I stayed in bed all day Sunday...I couldn't move. And Monday wasn't much better. The negative wind chill factor...I am sure...couldn't have helped.

Early this morning, Mom drove out from NJ to take me to see Dr. Rumore. It is exactly two weeks since I finished my Rituxan treatment and we were anxious to hear what he had to say.

Within a few minutes of Dr. R walking in the room, I knew he was happy. One by one he asked me to attempt the maneuvers I was unsuccessful at for two years. There I was...rising out of the chair unassisted...walking towards the door with an almost "normal" gait...standing on one foot...squatting down...and then returning to my chair. I DID IT!

After a discussion, it was decided that I could stop the prednisone. He didn't want me to begin physical therapy just yet...but I could exercise on my own. Small steps.

He does not have a definitive answer as to when I will come back for my next treatment. There truly is no protocal for MCTD/polymyositis. Dr Rumore felt six months would be ideal, but if I begin to weaken, I could have it in four months. However, I will confer with Dr. Spiera when I see him next month.

It is getting very late, but I wanted to be sure to get all my thoughts down. My eyes are heavy and closing. But overall, this was a wonderful few days. And I know it will just get better and better. You just wait and see!


Anonymous Anonymous said...

Beverly, I have been so interested in your experiences with Rituxan. We at TMA are now recruiting patients with dermatomyositis or polymyositis for a trial that will be in centers all over the country. There are even some funds for travel for those who are not near the center. I know that you did not fit the trial parameters, but maybe there are some people among your users who would. I would also like to talk to you about your experience with the drug. Your readers with myositis can find out more at www.myositis.org. My email address is theresa@myositis.org if you want to contact me. Many thanks for the hope you give people with MCTD and polymyositis.

3:46 PM  

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