Wednesday, May 23, 2007

Playing Catch Up

I had promised myself that I wouldn't let so much time pass between entries...but I did it again. Where do the days go? They are flying by.

This weekend is Memorial Day, and unfortunately I am quite ill. I played a short gig on Friday night and sang more than usual since we were down one singer. My throat didn't feel right, but I attributed it to allergies.

I could barely speak for the last few days, and my throat was burning like it was on fire. I thought it best to see my primary doc, and boy...it is a good thing I did!

Not only is it not related to allergies, but I have an ear and throat infection! The doc feels that it is all sinus-related. He prescribed antibiotics, and remarked this is happening very often.

I asked if the reason I am coming down with so many illnesses lately was due to the fact that I am no longer taking prednisone. He said absolutely not...that is was all a coincidence.

This evening I felt worse, and took my temperature. My normal temp is about 97, and it started rising to about 100. I immediately took some Tylenol, and it came down a bit.

This really scares me...the fact that I cannot fight a simple infection. I am supposed to drive Mom to NYC on Friday to her doc at NY Eye and Ear. But I am not so sure I will be up to it.

I am still awaiting a call back from Dr. Rumore's office regarding my next Rituxan treatment. Seems the pharmaceutical company will only give the meds every six months, per protocol. But the protocol isn't for my disease...so thus the conflict.

My body is definitely weakening...but I am staying optimistic. Hey, the sun is shining most days and the pool is beautiful. I just need to feel good to go take a swim!

Next week I have an appointment at the Social Security office to pick up Jarrett as a dependent. I have to bring all the court papers and his new birth certificate. We will see how that goes!

I did receive a Medic Alert bracelet and membership free of charge. Seems I am entitled to lots of benefits because of my situation. But if no one tells me about them, how am I supposed to know? I will ask lots of questions at next week's meeting at the SS office.

One thing I am entitled to is a free NYS beach pass...so I sent in my materials and am awaiting a reply.

Goldie is growing really fast...she is a handful, but beautiful. Dylan finally seems to have adjusted to his new sister, and they really play hard. At first I was nervous, but he knows that he is bigger and has to be mindful of her size. I am glad he has a playmate...he is the best and deserves happiness for as long as he is with us.

In two weeks we will be celebrating Jarrett's graduation...about 30 or more people will be coming here. I found a terrific caterer and all should be set by next week. Now the weather just has to cooperate!

I can't believe my "little boy" will be going into High School this fall. Time surely flies!

Wednesday, May 09, 2007

Our Little Angel

Guess what? You will never believe this. Never. Not in a million years.
Sunday afternoon, Sally and I dropped Jarrett off at a friend's confirmation party in Merrick. It was approximately 3 pm, and we had some time to play around. Of course I spotted the pet store up the block, and Sally agreed to apease me!

For the last few weeks since our 9 year old golden's cancer has returned, we have discussed adopting a mini dog. There was no way we would ever adopt another golden, as Dylan is my third golden retriever with cancer.

When we walked in, a tiny teacup puppy caught my eye. He was so small and fragile. I could never imagine having him in our home.

As I looked around, I was extremely impressed with the place. It was clean, the animals looked healthy and happy, and there were many people coming in to pick up their pets. I had heard good things about this store...as it did not obtain their dogs from puppy mills, but directly from the breeders themselves: thus the high ticket price. All the dogs were pure breds with papers.
Within a few moments, we noticed a cage with two golden retrievers. I told the animal assistant that I would never own another one due to their poor health. As I said it, one of the goldens looked up at me and stretched her arm. Sally and I both melted. We had to hold her...even for just a moment.

11-week old Goldie

Fifteen minutes later, I was sitting on the floor crying. That bundle of joy brought tears to my eyes. And I have never seen Sally so attached to a puppy. She is a cat person, 100 percent. But something was different.

Of course, that little 11-week old golden retriever went home with us that day. Our older golden welcomed her into our home, but the two cats are not too thrilled. Jarrett was shocked, most of all...and said he used to love the kitty, but now loves the puppy.

Who knew that a little puff ball could bring so much laughter, love and happiness to our home. We decided to name her Goldie...based on her coloring. She is so sweet and wants to please us.

I hope that she enjoys us as much as we enjoy her. And I pray that she brings joy to Dylan, our 9-year old golden, as his days on earth begin to dwindle. She follows him everywhere, and copies everything he does! It is so adorable to watch.

This has truly taught me one thing: NEVER say never!

Friday, May 04, 2007

The Secret

Where do I begin...to tell a story...OOPS! Isn't that the theme song from Love Story?! Silly me!
I didn't realize it has been two weeks since I last wrote in this blog. My life changed forever last Friday. I am officially a Mom. A "real" Mom! Sally and I finally stood before a judge and adopted Jarrett together!

Mom Sally, Judge Freundlich, Jarrett and Ma Beverly after the adoption on April 27, 2007 at the Suffolk County Family Courthouse in Central Islip.

I have been raising Jarrett with Sally for almost eight years, so it was only a technicality. But, next weekend I will be able to celebrate Mom's Day for real! Every time I look at my son, I feel so good inside. This is the reason I am fighting so hard!

As for my health: My appointment with Dr. Rumore went well last week. Overall, he is pleased with my progress and wants me to have a second round of Rituxan next month. However, it all depends on the pharmaceutical company. It seems that the protocol calls for every six months, but he will see what he can do.

The doc was also very concerned with my memory loss. He mentioned that it can be caused by many things including medication, the disease process (which mimics Lupus), and depression.

He also concurred with Dr. Spiera that my neck flexors are still extremely weak, and that there is a lot of pain and inflammation in my elbows and wrists. Dr. Rumore suggests working on exercising those joints specifically.

When I saw Dr. Maurio (my neuropsychologist) on Tuesday, he gave me a brief neuro test on the computer. I did ok, but he is anxious to see Dr. G's results from the NeuroTrax test. My long term memory is gone. Kaput. Bye bye.

Good news is that the pool is open and finally clearing up from all the algae. Since we had such a warm winter, the pool water turned green and it took me a week to clear it up. I turned the heater on this afternoon and we are all hoping to be able to take our first dip within a few days.

With the warmer weather, I am feeling better...but I still have my moments. I sometimes forget about my disease...but then reality sets in.

I must remain positive.

Speaking of positive...have you read "The Secret?" A friend of mine lent us the DVD and it was fascinating. However, since being diagnosed...I have tried to live my life exactly as it stated. Dr. Maurio taught me to love myself and believe in the power of positive thinking.

There really is something to the Laws of Attraction. Keeping a positive attitude and positive energy around you can only be a strong force in your everyday life. When I am upset, I try to think only good thoughts. And I try to avoid people that can bring me down.

BTW...I now truly believe that God has given me this MCTD for a reason. Not as a punishment or to test me. I believe I am meant to educate others about how to lead a fulfilled life and find everlasting peace and love.

You see, I received a touching letter from someone who found this blog two weeks ago. She was diagnosed with a similiar disease and didn't know how she was going to go on each day. But, after reading about my struggles and will to survive, it inspired her to keep on fighting.

The email brought tears to my eyes. In fact, I couldn't stop crying for quite some time. I realized then, that moment, that I am here...on this earth...at this time...for a reason. This beautiful young mother was supposed to find me...so that we could connect...and move forward together.

If I can keep on touching peoples lives with my story, it makes it all worthwhile. I promise to keep on writing and helping those who may be lost along the way.

Peace out!