Sunday, June 21, 2009

Life's Ups and Downs Continue

It's Father's Day! And, it is raining outside...again...for the fourth week in a row. We get a few peaks of sunshine every now and then, but it is just a tease.

Believe it or not, there has only been one 80 degree day all month, and it rained every day except for three!!!
The meteorologists are promising that we will get through this coastal low in the next few days, but I wouldn't bank on it. Needless to say, I am in excruciating pain. And, what worries me the most, is my loss of memory.

Since the Rituxan treatment, I have regained some strength, but the pain never dissipated. Each and every day I must contend with constant pain...with absolutely no relief. It takes a very strong will to keep a smile on my face, but please understand that sometimes I just need to cry. Don't take my turning down an invitation personally...as am taking it one day at a time. I am trying my best to live life one day at a time.
I have restarted physical therapy, but most days are limited. I feel blessed to have found such a knowledgeable and compassionate physical therapist. She is very familiar with my disease and understands my plight.

Life has truly been spiritually and emotionally challenging since my last post. However, let me begin with the wonderful news!

Drum roll please....I have been accepted into the Johns Hopkins Myositis Center! I originally tried to see one of their physicians in 2005, but I was turned away. However, this time, they called me with the good news in just a week after sending in all of my medical records!

After my last rheumy visit, I honestly felt that we were at a standstill. Having the best doctors in the world review my case, those docs who only treat patients with myositis, is truly a blessing. Even though my appointment is two months away, I feel that I have another chance to beat this thing.

It was explained that I will undergo a full days testing, including electromyography, CT scans, muscle MRI and pulmonary function tests. To my surprise, my appointment was made with a neurologist instead of a rheumatologist. But, they are the experts!

Another wonderful piece of news is that one of my photographs was selected for exhibition in the Fire Island Lighthouse Preservation Society's 8th Annual Art Show, June 25 - July 19th! You have no idea how deeply touched I am to have one of my photos hanging in one of my favorite places in the entire world.

Newsday columnist Sylvia King-Cohen called and asked if I would answer another question for her "Asking The Clergy" column. Of course I said yes, and my answer to "Name Five Traits of a Good Father," was featured in the Father's Day edition of Newsday on June 20th!

***Note to self...I must continue to focus on experiencing good in my life--despite the constant pain from my illness--to be in a better position to bring good into the lives of others!

The family took a ride across the bridge to New Jersey earlier this month. We had the honor and privilege to see a good friend from my high school days star in one of my favorite shows, "La Cage aux Folles." Brian played the character, Albin/ZaZa, and his beautiful voice still remains a gift from God. I hadn't seen him perform since the 70s, and last saw him at our 30th high school reunion.
My darling Brian and I posing after the show!

Brian lost his beloved father this week, and I want to send him my deepest condolences. Keep the memories you shared close to your heart forever.

Over the last few weeks, there were several other losses, including Karen's brother Craig. He is now at peace and no longer suffering.

I also want to once again offer my condolences to my cousin Rena on the loss of her mom. It was just a year since your dad's passing. Take comfort in the fact that your mom and dad are now, once again, reunited. God bless you and the entire family.

It is with deep sorrow that I also send out love to Julie on the passing of her beloved golden retriever Taylor. In my last blog post, I sent prayers to "T" with hopes that he would stay with us a little longer. He put up a valiant fight, but in the end, God called him to Rainbow Bridge.

Good-bye sweet Taylor...until we meet again.


Words cannot express how we are all so deeply touched by his passing. My little Goldie is heartbroken and misses her best friend. I will never forget those special days spent walking the dirt paths at Southards Pond or along the waters edge at the beach last summer. They will forever be etched in my heart.

I will truly never know how many peoples lives are impacted by my personal feelings that are written in this blog. My mother-in-law Virginia surprised me last week with a painting of a blue jay. She had read one of my more recents entries on how I believe that Dad has come back to earth as a blue jay and visits me almost every day. The words moved her so deeply that she was inspired to paint a picture just for me. I proudly have it hanging in my office, and will cherish it forever.
Thank you Mom!

On that note, I ask each and everyone of you to remember to take a few moments each day to be aware of your eternal oneness with God.

I want to send forth, into the atmosphere, the love and blessings of God's presence to everyone...everywhere.

Happy Father's Day, Dad. I miss you each and every day, but especially on this, the fourth Father's Day without you. You are forever in my heart. I love you.

2 Comments:

Blogger Sharon said...

keep fighting the fight my dear friend.
looking forward to seeing you and sally 7/18.
love ya, sharon

8:58 PM  
Anonymous Jerry Wiliams said...

Hi, my name is Jerry and I live in Delaware. I am 34 yrs old and I have polymyositis along with mixed connective tissues disease. I too am one of the percentages that does not fit in the box as you say. Would love to chat with you sometime about the positive ups and downs and how we make it through. I am starting a blog now called Polymyowhat? at www.polymyowhat.com. I am looking to try and help others along with helping myself and sharing stories of people like us that are chronically ill but to a point where we don't look sick most of the time and the issues it causes. my email is jerryw1976@hotmail.com and I would love to chat with via email if you have time. Thanks and keep fighting.

7:43 AM  

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