Tuesday, May 05, 2009

Feeling Blah on Yet Another Rainy Day

I cannot believe how the days are just flying by. It is almost a full month since my last post...so a new one is long overdue.
My two chemotherapy sessions are complete, and thank goodness, they went smoothly. However, during my last treatment they sat an older woman next to me for a few hours that had a cough. Of course, by the time my Rituxan was finished, my chest was extremely heavy.
Within two days, I was violently coughing and bringing up dark green mucous. As the days progressed, my chest hurt so much that I was concerned that I had pneumonia. But thanks to the quick action of my doctors, the 'Z' pack, and a negative chest x-ray, it was only an upper respiratory infection.
I am going to speak with my insurance company about being isolated next time for my infusion, whether it be at home or another location. My immune system is being "shut down" during the Rituxan, and as witnessed this time, I am at risk of contracting anything that is in the room.
People are often dishonest about their health status when they come to the infusion center for their two-hour RA treatments, and it puts those of us who are there all day for more serious illnesses.
My doctor's visit went well two weeks after the infusion, and he is weaning me off the prednisone. And he prescribed physical therapy treatments in a few weeks. I only gained six pounds this time from the drug, but it has made me very uncomfortable and my face is once again moon-shaped. Once I begin physical therapy treatments, I should see the weight start to come off...or so I hope!
Now...for some wonderful news! On April 23rd, I had the privilege of meeting some very special people who have also been diagnosed and are living with a form of Myositis. My new friend, Trudi, organized the luncheon and I walked away with so many mixed emotions. Each one of them deeply touched me...with their stories, their individual and family struggles, and most importantly, their strong will to survive!
That evening, I felt an overwhelming sense of being part of something big! I always knew that my Myositis Family was there for me, via the internet. But now I actually have people here, on Long Island, who know how I feel and what I go through each and every day.
As a result of the contacts that were made that day, I called the national office of The Myositis Association (TMA) in Washington, DC and will officially start a Long Island Support Group with the help of Trudi, Tony and Melissa. TMA calls it the Keep In Touch (KIT) support group network. Our group will be able to connect Long Islanders with other myositis patients and their families. It will be amazing!
Another amazing thing happened recently as well! I was nominated for the Our Bodies Ourselves Women's Health Hero Award! What an honor!!!
I remember reading that book, cover to cover, over and over again as a young teenager. I would sit in the library for hours and read it...or look at it at the bookstore! It truly changed my life! So, to be nominated for such a prestigious award is truly humbling!
The contest works as follows: One winner will be chosen by the staff and Our Bodies Ourselves' Board of Directors, while the other winner will be determined by the public through a ratings system located on the contest website. Public voting ends this Friday, May 8, 2009 and the entry that receives the highest overall ranking will receive the Audience Choice Award.
Please, if you will, please ask your friends, family and co-workers to rate my entry. (Entry dated April 15!)

Thank you, thank you, thank you!

Life has truly been a struggle over the last few months, despite my attempts at making it as "normal" as possible. My health, even with the two chemotherapy infusions, is still unstable. I am attempting to get out a bit, but the torrential rainfall is making it difficult.

NY has not seen the sun in days, and the meteorologists are forecasting precipitation for the rest of this week. Ugh! Hopefully the sun will shine bright for Mother's Day this weekend. My mom and brother are driving out for the day, and I cannot wait!!!

Before I close, I want to comment briefly on the reaction I received to my last blog. The words always come directly from my heart, and while it is true that so many people in my life have disappeared, others have stepped up to the plate and have shown what the meaning of friendship is all about.

Right after I published the blog, the phone rang for a few days. It was right after I received my infusion, thus I was unable to answer the phone and speak to all of you. But I want to thank each one of you for reaching out and showing that you care.

Please...please keep calling. Remember, those of us with a chronic illness feel totally isolated from the outside world. I was homebound for almost two months during this last flair, and the silence in the house was, quite often, too much for me to bear.

I hope that, as the weather warms up and I begin physical therapy, that my body gets stronger and stronger with each passing day. In the meantime, all of my medical records have been sent to the Johns Hopkins Myositis Center in Baltimore, Maryland. Once their committee reviews everything, they promised to be in touch.

So again...I wait. But I am optimistic that brighter days are right around the corner!

I want to send a special prayer to my little Goldie's best friend, Taylor, who is battling a serious illness. May a white protective light of God's presence surround your body with protection from negative outer energy influences. Keep fighting, sweet Taylor, for we all love you!

Goldie (left) and her best friend Taylor

Let me end here with a one of my favorite quotes by Albert Einstein: "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

God bless you...until next time!