Tuesday, March 17, 2009

Waiting For the Phone To Ring

Happy St. Patrick's Day!

The first day of spring is only three days away. This morning, I awoke to a hint of sunlight peaking under my bedroom door jam, and the sound of seagulls circling around the house.

I thought it was quite unusual to hear so many seagulls, so I slowly made my way to the large bay window in the livingroom. Our cat, Gizmo, was in deep concentration as I observed close to a dozen seagulls confront each other over a few scraps of old bread. The biggest, toughest bird always won, with the others hopping back a step or two, avoiding his flapping wings and potential scrape from his beak.

These familiar creatures brought a much needed smile to my face, as the thought of spending warmer days walking along the beach filled my head. I needed a diversion, and today...I got one!

For the last few weeks, my body has begun to break down. It has been exactly ten months since my last Rituxan treatment, and the doctors had hoped that I could stay in "medically induced remission" for at least one year. But it just ain't happening.

Since mid-February, I started to feel extremely tired and weak, but contributed it to the craziness of my daily life. Between doctor appointments, motherhood, and rehearsing for my role in "The Vagina Monologues," my symptoms did not concern me. Besides, Dr. Spiera's visit in January was extremely optimistic. He was pleased with my progress, lab results and overall condition. In fact, he didn't see any reason why I couldn't take a trip this year!

But something changed. Almost in an instant. I noticed that I could not hold onto small objects. I would drop my keys just about every time I tried to open the door. I was becoming extremely forgetful and clumsy.

I continued my daily routines as best as I could, including a few extracurricular activities. I had the honor of being cast in VDAY 2009 Bay Shore's "The Vagina Monologues" to benefit the anti-violence project here on Long Island. I was thrilled to read award-winning playwright and activist Eve Ensler's personal story entitled, "I Was There In The Room," the role that Jane Fonda enacted on Broadway several years ago.

It is very important to me, personally, to eradicate violence against women and girls once and for all. By participating with my cast at the Boulton Center, we were able to honor and give voice to the women and girls around the world who have survived the many faces of violence. We must stop rape, acid burning, female genital mutilation, sex trafficking, incest, keep local shelters open and give women back their voices--voices that were once silenced by violence. Together...we can empower!

Throughout the month, we celebrated Sally's birthday, Valentine's Day and life in general! With small hints of spring in the air, my family is committed to trying to spend at least a few hours over the weekend walking our pup at the beach. "Family time!" Ahhh...what a concept! There is nothing like strolling along the waters edge, hearing the crash of the waves along the sand and watching dogs, of all shapes and sizes, running together with a ball. My heart fills to capacity with love when I see my little Goldie frolicking with other puppies and enjoying life!

I also had the honor of being asked to be a guest speaker at a Pride in the Pulpit event in Sayville. Pride in the Pulpit is a program of the Empire State Pride Agenda Foundation and is a faith-based network of clergy and laypeople representing hundreds of congregations and dozens of faith traditions across New York that advocates for equality and justice for LGBT people and their families.

As a minister and a newly "legally married" woman, I was asked to share my story about the difficulties faced by same-sex couples in adoption, insurance and life in general. The positive feedback I personally received was inspiring to me, and I feel blessed that I had the opportunity to participate.

Over the last month or two, I have also had to face and struggle with loss. Some truly unexpected, others by personal choice.
Either way, any form of loss is a significant life change that can affect us in innumerable ways. We have to find the strength to move forward, even if our heart is preventing us from taking that first baby step.

Dotty Ruprecht passed away on February 20th...and proved to me, once again, that God does work miracles. You see, one of my closest friend's, Joan, had just lost her dad only a few years ago, and now had to face the passing of her mom.

From the stories that Joan shared with me over our 14 plus year friendship, and from the time I spent with the two of them, her parents, Freddie and Dottie, shared a love that transcended both heaven and earth. Fred visited Dottie every day in the nursing home, year after year, even after his ALS diagnosis. Dottie's alzheimer's disease prevented her from truly facing the death of her beloved husband. But God works in mysterious ways! Despite being placed into Hospice Care, she held on until Freddie's birthday, and passed quietly into the next life as their anniversary song played softly in the background. When the last note finished, she took her last breath. They are now together, forever, in God's heavenly kingdom.

A NJ childhood friend and neighbor passed away, at age 50, from MS and cancer. Carlin and I grew up on the same street since preschool, sharing the same friends right up until high school. Even after I left New Jersey, I would hear the stories of her diagnosis and courageous struggle to live life to the fullest. Unfortunately, her body was riddled with cancer and she was given six months. Less than a month later, Carlin passed on.

Despite my failing health, I drove to NJ to attend the memorial service. I hadn't seen Carlin's mom, Mrs. Heerschap, in over 25 years and I felt that I needed to pay my respects. Seeing her and looking at the photo montage brought my health status down to a new level. I had to fight...even harder...because life is much too short.

Driving my car across state lines...driving my car in general at this point...is a very difficult task. My body has gotten weaker and the pain has been unbearable. My visit last week to my rheumy confirmed my suspicions...IT IS TIME FOR CHEMO.

Each day that I awake, the pain is a constant reminder that I am very ill. No matter how I continue to live each day to the fullest and push away the facts in the back of my head, I have polymyositis.

As Mary J. Blige sings so beautifully: "Sometimes I wish that I can stand here and fade away...so that no one could see the tears running down my face." That is exactly how I have been feeling lately. I am a strong woman, and I don't want anyone to see my weakness. But right now I can no longer hide it.

Within 24-hours of my doctor visit, I was contacted by the Genetech Foundation who informed me that I was approved to receive Rituxan through their Foundation. Their commitment to people with chronic illness, like myself, is amazing. Now the wait begins for an actual appointment.

The freakin' red-tape is absurd. In order to actually "receive" the treatment in the infusion center, an outside agency has to obtain benefit verification. It has been a week, and NOTHING. In the meantime, my health is failing fast and the pain is so intense that I am popping pain medication every six hours, between all my other meds.
Oh, and yes...I am back on the dreaded prednisone. Aargh.

I had an argument with someone in my doctor's office, and even Sally went to bat for me. I was told I had to "wait" for verification...I just can't come into the office and have the necessary treatment. Very, very rude and cold. I guess it doesn't matter that my health is spiraling each and every day...and that the longer I don't receive the treatment, the worse my health becomes. If it was their mom, sister, niece or best friend...would their answers be different? Makes you wonder, huh?
So...here I wait. And wait. And wait for the phone to ring. I am still waiting.

I also received upsetting news regarding my cholesterol levels. The numbers have not changed, despite my diet over the last six months. It has reached 236 and my LDL is now 165. The problem is that if I begin a statin, my disease will worsen.
So at this point, I have been told to wait until my treatment is over and we'll address this issue then. I will have to go on cholesterol lowering meds, no matter what the consequences...but first things first. It is obviously all genetic...and there is nothing I can do about it.
In the middle of everything, Long Island was hit with a major snowfall! Over 15 inches of snow blanketed our neighborhood, but thankfully it didn't last too long. Jarrett finally had his snow day and Goldie had her chance to bounce around in the snowdrifts! The little things that mean so much!!!

Sorry for all the downers today...I know that my blog is good therapy for me and I needed to vent. When I began writing today, my head was filled with thoughts of brighter tomorrows. And I know deep in my soul that God is looking out for me and will get me through this tough fight.

If you are lucky enough to find a way of life you love, you have to find the courage to live it. And I will.

I promise!


Anonymous Danny said...

I find your courage and fortitude an inspiration for me. When little things start to bother me, I try to stop and think of all of the turmoil that you are going thru and realize that the things that are bothering me are trivial in comparison. I pray that you can start your treatment and your recovery soon. Keep your head up and your spirits high! God, and the rest of us are watching over you.
Your Friend,

10:57 AM  
Blogger KT said...

I don't read this as been "down". I think you see things for what they are and don't sugarcoat it.

Acceptance is the first thing to fighting our disease. Strength, well you've got that. Support, plenty of that too. Just don't feel bad about being weak, in the sense that others will see you that way, because it is what it is. Accept what others can do for you as you have done so much for them.

Love you, Kristin

1:02 PM  
Anonymous Anonymous said...

I too, like Dan, am truly inspired by your strength and optimism. I know you must have your moments of despair and tears, and thats your right. Allow yourself to cry and release that frustration. You deserve better and I know God will not let you down! Please know that I value our friendship tremendously and I am here for you! May God give you strength and courage to get through this difficult time.
Love Ya!
Chris XXOO

1:05 PM  
Blogger Joanne said...

You are amazing. It's funny that I received your blog today. Mom is going in for surgery tomorrow and I too am reminded that life is too short. Love you and thinking of you.

1:12 PM  
Anonymous candace haugen said...

hi, my name is candace. i live in Roseau, Minnesota. i am 23 years old and only a year and a couple of months ago was diagnosed with and undifferentiated connective tissue disease/polymyositis. i have two small children and am having a difficult time with any physical venture, small or big. i hate always being blamed for things i havent done or people always acting like its my fault or something. i didnt ask for this and i wouldnt wish it upon anyone, but if they could just live in my body for 10 minutes,i beleive that their comments would change alittle. but, you cant make them feel that so i know i need to remeber that i am trying my hardest,i am trying to be the best mother/ girlfriend/person that I CAN BE.....not what other people think i need to be or do. they will never understand the disease, the pain, allll the other symptoms that cloud my whole excistence, and all the side effects that come with trying to "fix" my sickness. the meds are horrid and sometimes i feel like their not worth it.But, i am, and my children are worth having a healthy happy mother around- even if its only telling them or trying my best to show them that mommy is ok, even if i sooo am not.what a selfish disease, what time and energy and money is put forth to try to have a normal life and yet as normal as i try to have it for my boys, i still inside am crying because how can someone have so much pain and not be bleeding to death or dying soon. the thing with this disease is that sometimes,alot of times, i feel like i am just dying a very slow painful death andthats sad. i am not really a negative person but this part of my life i have no control over and it scares me. so far these 6 years have been the most trying times of my life, i mean there is some positiveness about the situation....at least they actually found something wrong after years of harrassment, and discrimination...its not in my head..its in my body and it hurts,bad. there is way worse situations out there, way worse diseases to have. alot that kill within a short period of time and i thank god that i dont have one of those. i'm just trying to cope, trying not to be angry about it, trying not to let it take over completely,trying,trying,trying... always trying.there is a reason why this is happening...even if i cant understand it right now...there is a reason. maybe i'll be a stronger person eventually. i hope!
candace haugen

10:15 AM  
OpenID sweetandfit said...

hi there! I just found your blog and wanted to say hi - I am in the process of being diagnosed with some type of myositis - I feel that I can emphasize with your pain... I have a blog as well, but its not solely devoted to my illness - looking forward to reading more

11:57 AM  
Blogger SHANNON said...

I am speechless....I find things relative, sad, frustrating, inspiring- but none of it makes sense to have to go from normal to suffering.....I'm sorry for your body but inpressed by your soul....

10:44 AM  
Anonymous Anonymous said...

I am waiting for my polymi lab work to come back...

12:43 AM  
Anonymous Anonymous said...

I'm 59 and have MCTD. As a woman in constant pain, I like reading your posts because they lift me up from feeling sorry for myself. We each have a road to travel and it reassuring that others are right along with us, spiritually holding hands. We'll get through this. We must walk the road. We are not alone. Thanks for being there.

2:43 PM  

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