Wednesday, March 28, 2007

Celebrate Good Times...Come On!

What a glorious day to be alive! The sun is shining, the birds are chirping and I can hear the little children playing and laughing outside of the local elementary school around the corner from our house.

Why am I in such a great mood? Well, today is my 49th birthday! And when I woke up, I stood up out of bed and walked around the house...with very little discomfort.

You see, a year ago today:

  • I was in a wheelchair and used a cane to get around.
  • I couldn't take a shower without assistance.
  • I couldn't hold a fork without dropping it when I tried to eat.
  • I was having IVIG infusions by a homecare nurse.
  • I was in so much pain that some days I couldn't imagine going on.
  • I was in such a deep depression, that I never smiled.
  • I didn't see the light at the end of the tunnel.

But with the love of my family, friends and supporters...I am still here to celebrate another year of life. I want to thank each and every one of you for being there for me. You never gave up on me, despite all the negative forces surrounding me and this disease.

And I especially want to thank God for loving me and giving me the inner strength to believe in myself despite the odds set against me. I know I still have a long way to go, and I must continue to fight. But I have my boxing gloves on and will NEVER take them off.

Happy birthday to me!

Wednesday, March 21, 2007


Today is the first full day of spring. Yippee!

I actually scheduled our pool opening for the end of April. I cannot wait to take my first plunge of the year!

The weeks are flying by...and I am still basically pain-free. I am exhausted, though, but I can deal with that. It takes quite a long time to actually get out of bed every morning. But once I am up, I usually do not go back into bed.

When I woke up this morning, I had a wonderful surprise. My face is actually going back to an oval shape. My weight hasn't changed much, but I can see and feel the fat slowly disappearing.

This evening I walked for seven minutes on the treadmill. And guess what? I RAN for 30 seconds! The first few seconds were a cinch, but then I had to go back to walking. But who would have thought a year ago, or even a month ago, that I would be able to attempt to run even for a second?!

God is giving me a second chance at life, and I want to make the most of it. But I will still take it a day at a time.

Later, alligator!

Thursday, March 15, 2007

Psychedelic Dream--A Sign?

I cannot believe it. The temperature rose to 60 degrees yesterday, and tonight we are expecting a snowstorm. Go figure!

I have been laying down most of the day...must be the change in barometric pressure. When the sun is shining, I have so much energy. But as soon as it is blah, I feel blah! I did finally get back to band rehearsal, so it took a lot out of me. It was sure good to be back!!!

Medical update: I saw Dr. Gudesblatt, my neurologist on Monday, and he was extremely pleased with my progress. However, he doesn't agree with my rheumy on how to proceed. I told him that I have an appointment with the "Myo Guru" next month in NYC, so we won't change anything until then.

He feels that I should have another Rituxan treatment in three months, as that is the neuro protocol. He also wants me to stop the Imuran and all my allergy meds. He feels they are making me tired. I can't imagine myself off of my Allegra. Especially since it is allergy season!

Dr. G was quite concerned with my memory loss, so he sent me for a brain MRI and has scheduled a "Mindstreams Cognitive Assessment/NeuroTrax." NeuroTrax is a computertized test designed to measure brain function such as hand-eye coordination, short-term memory, and long-term memory. The test is individualized according to symptoms and age.

He is also sending me for a genetic-based blood test, so I will be curious to the results.

On another, re, me! Ooops...still have the music in my head! Anyway, I had a extremely strange dream. It was cool man! I saw flashes of light and weird shapes, like in a kaleidoscope. The shapes were moving around and I remember feeling a very weird sensation in both legs.

I was very aware of what was going on...I was NOT asleep! The pulse-like feeling in both legs moved from my toes to my hips for approximately fifteen minutes. As the rhythmic feeling ceased, I saw a flash of light and a warm sensation completely enveloped my lower extremities.

I cannot explain what happened...but I opened my eyes and felt very peaceful. It was as if my muscles were regenerating themselves!

Do you believe??? I do!

Saturday, March 10, 2007

Here We Go!

One...two...three...! Remember to breathe!

If that sounds like something you hear at the gym, you are right. I started exercising yesterday at home with my son. The doc said it would be better not to go for physical therapy yet. Since I am a former bodybuilder, I know what I am doing, so it is fine. As long as I don't do it alone!

I walked on the treadmill at 2.0 miles per hour for five minutes. Not bad after such a long hiatus. I also lifted five pounds for my bis and tris. Today I am a bit sore, but not too bad!

Today the three of us worked out together. I did eight minutes--a quarter of a mile! Hooray! What an accomplishment for someone that was in a wheelchair exactly one year ago!

Tomorrow I will do upper body weight training, slow and easy. Now I just can't wait to open the pool next month so that I can start swimming. I feel so free when I am in the warm pain at all!

I have been off prednisone for five days now. Hopefully I will start to see a difference in a week or two. I want to get back in best as I can. There are no guarantees that my muscles will regenerate. I will have to work around that.

Yesterday I had my hair let it grow. As my birthday approaches, I hope to discover the new me that is deep inside. The one who is still strong, happy and proud of who she is today, and what she has been through the last two and a half years.

I pray that each day brings me more strength and renewed hope. Watch out world, here I come!

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 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!

Thursday, March 01, 2007

Spring Is In The Air

Today is March 1st. It was a beautiful day...close to 50 degrees. The sun was shining, birds chirping. I even heard a cricket in the backyard by the shed! Who could believe that only five days ago we got a few inches of snow!!!

Daylight Savings Time begins on March 11th, and then ten days later is the first day of spring. I cannot wait...even though I know we could still have winter weather. But I always felt that once it hit my birthday on the 28th, we weren't that far away from the warm temperatures! I am going to be 49...oy vey...49! Time is really passing by quickly.

Yesterday I had my taxes done and I am in big do do. Because I received lump sum payments for my disability in 2006, rather than spread into 2005 and 2006, I owe big time. Yet one more reason to get myself stressed out. I realize there is nothing I can do about it, so why get upset? We do what we must do. I really don't understand...if I am disabled and receiving only disability payments...why do I have to pay tax on that money? Don't they realize I can barely get by as it is? NO THEY DO NOT.

I actually woke up very happy today, full of energy. Must be the sunshine! I ventured out for the first time over four weeks. I got into my car and drove into town. About an hour later I thought I was going to collapse, so I came home. I guess I just have to take it slow. Tomorrow I will rest, except to go to the local pharmacy. I have a big night on Saturday...and I have to save my energy.

Tah, tah for now!

This photo was actually taken from my front window!