Wednesday, April 08, 2009

Hopeful For Tomorrow

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."

I am scared.

There. I said it out loud. I am scared!

Let me back up a bit and fill in the blanks. I finally had a Rituxan infusion treatment on March 26th with little or no drama. The headaches were mild and the side-effects were minimal.

That being said, tomorrow is the last infusion and to date I have barely left the comfort of my bed. My legs feel like lead weights with 20 lb. bricks attached. My body is extremely weak and there is an overall sense of malaise.

In all honesty, I have kept positive through everything...but lately I am experiencing a sense of uneasiness. Uncertainty. Something more?

Instead of sitting back and just waiting, I am becoming more proactive and will not just wait for the other shoe to drop. After my chemotherapy tomorrow, I need to rest and gain back my strength. I have my next rheumy appointment on April 21st. At that time, we will discuss my latest lab results and my overall health status.

My big decision...I want to go to The Myositis Center at Johns Hopkins as soon as I can. I am going to ask Dr. R to send them a copy of all of my records, and I want to explore any and all options for my future medical care.

We are skating on thin ice...exploring unknown territory...but this is MY LIFE. And if this Rituxan treatment is not working, and in my heart I honestly don't think it is, then I need to find another option. And not when it is too late.

I decided to visit my beloved Fire Island Lighthouse the day before treatment, and I am so glad I did. The air was brisk, but the sky was clear and blue.

Nothing brings me closer to God than meditating near the ocean underneath the beacon of light. With all that I am...I recognized my oneness with God, working within me, to maintain my independence...and visualize a white protective light of God's presence, surrounding my mind and body...protecting me from outer energy influences.

In the meantime, my birthday and our first anniversary came and went...very uneventful. When I am stronger, Sally and I will celebrate in a special way...but until then, everything was very low key.

My brother and two nephews drove out for Sunday brunch at Captain Bill's in Bay Shore. I wasn't much company, but it warmed my heart to see everyone. Of course, we sat looking out at the water, but it rained! Oh well!
Scott, Shane, Bev and Craig

I cannot believe that it is a year since our commitment ceremony! Time is flying by much too quickly. I had a beautiful bouquet of spring flowers delivered to Sally's office as a surprise, and she had a local florist deliver a spectacular floral arrangement to our home. Great minds! I promised her that when I am feeling stronger we will go out and have a proper celebration. I cannot wait.

A few days ago, I had several "visitors" outside my bedroom window. Since my father's passing, we all believe that he comes around to check on us from time to time...and has taken the form of a blue jay. Don't ask me why...but I am certain that it is him. The blue jay is always here when I need him...and there is always only one. We have hundreds of others birds all the time, including pairs of cardinals. But never more than one blue jay.

When I was so sad the other day, I heard a lot of commotion outside my bedroom window. It took me a few minutes to roll out of bed, but I am so glad that I did. I pulled the string on my blinds and saw EIGHT blue jays singing in all of their glory! I thought I was imagining the whole thing, so I yelled for Sally to come and see. And...even to her surprise and delightment, there were eight blue jays looking right at us! What an amazing present!
This past weekend, our friend Peter helped Sally take down the "deader than dead" tree in our backyard. Two years ago, it started to lose all the leaves and this winter, with each windstorm, started to come down. My fear was that it would end up in the pool!

Watching the two of them was quite amusing...but they got the job done. And what a fine job they did! We will enjoy the seasoned firewood in our chiminea this summer and our fireplace next fall. Thank you Peter!!! xo

On another note, I received a glorious email this week. I have been invited to a luncheon to meet several other people in the area who also have a form of myositis! Isn't that amazing?! I can finally put faces to a name...and we can talk and talk and talk about the issues that only we, as fighters of this ugly disease, can share. I truly am nervous, but excited at the same time! I will keep you posted!

Now...more than ever, I feel totally alone. I awake every morning with renewed spirit, but each day is a repetition of the previous monotony. People have stopped calling. I don't know why...when you need people the lean help...they disappear.

It is important to understand that people with a chronic illness struggle every day with pain, weakness and strong emotions. Someone like me...who was always the "rock," needs to lean on others for the first time in my life. I cannot do this alone, and my family needs the support as well.

My life will NEVER be what I dreamt it would be. NEVER. Just getting up to take a shower takes every bit of energy I have. I haven't been able to drive for over a month! And try to deal with the fact that I will never be able to do the simple things that we all take for granted ever again! I can't even lift a milk container or open a can of tuna. And don't get me started about the number of pills I have to take each when I open my eyes...then I have to wait an hour...then take another one with food, before 9am...and...what about the sleepless nights, despite the 10 mg of Ambien? Oy!
This is why I never complain...unless you ask. And if you ask, please...listen to me. Really listen. Sitting alone, each and every day, plays tricks on the mind.

The deafening silence. I want to scream! But I know that God will show me the way to a brighter tomorrow. I have to remain strong. I JUST HAVE TO.
Someone once said to keep your face to the sunshine, and you cannot see the shadow. I promise...I will.
"I do not identify my identity with any temporary negative experience--as I am NOT anything temporary--but I AM of the eternal positiveness and universal god consciousness in which negative darkness ceases to be."
This morning, through all of my uncertainty and questions, God's love and beauty touched me. Let me share my story...

We are having a new patio built in our yard because our old wood deck has totally fallen apart. Needless to say, we didn't expect this major expense, but there was no choice. Since I spend months enjoying our yard and pool, safety is number one! (I think that sounded like a commercial!!)
After speaking to numerous contractors, we hired a local guy to demolish and cart away our old rotted wood and build a cement patio. Of course, it isn't all that easy...there are complications...but we figured it all out.
This morning, three men arrived around 8:30 to continue the demolition and leveling that one man began the day before. All of a sudden, my little Goldie jumped on the bed and laid down on top of me. She looked toward the back window and starting growling intensely.

Very calmly, I asked her to get down and that all would be alright. No matter what I said, Goldie stood her ground and refused to leave my side. As the noise level outside became louder, my little golden moved closer and closer to me. She snuggled her wet nose in my ear and looked into my eyes with deep concern.

I realized that she was protecting me from whatever was going on outside. For the last few weeks, Goldie has followed me to the bathroom, to the kitchen, to my office and back to bed. No matter where she was...whenever I stepped away from my comfort zone, she was there. Not in the way...not tripping me...beside me.
Goldie's love and concern this morning truly showed me what unconditional love is all about. My little girl knew that the noise was not normal, and that by laying across my body, she would protect me from harm. It is a love that is so strong...nothing can ever come between us. Ever.
On that note, I am going to end here. I am extremely weak and it is hard for me to type.
Please keep my family and I in your I keep you in mine.


Blogger Sharon said...

you will always be in my prayers and you know that!!!
if i could take on your pain i would.
let me know how it goes with johns hopkins my dear friend.

33 years and counting.

love and unconditional support.

6:52 PM  
Anonymous Anonymous said...

Bev my Friend

My heart is aching for you right now after reading your blog..... if you ever need to talk my number is 631 841 4943 my friend..... Please try to stay positive You know better than all of us that God works in mysterious ways...... this is a test......

Love you

6:21 AM  
Blogger PAExile said...

You don't know me and yet you do...I too have Mixed Connective Tissue disease and came across your blog.

I was especially touched by your faithful companion of 10 1/2 years...Jake...a much loved golden was put to rest on April 3 of this year when we found he was suffering from lymphoma. Like your faithful companion Jake was always by my side.

I see the guys at Hopkins as does a friend here in Maryland.

I so relate to things you said in your blog...the pills, the ordinary things you can no longer do...

With your permission I will peek into your world through your blog periodically...


5:26 PM  
Anonymous Anonymous said...

There is only so much that training, even the most intensive training can do. The bond between you and Goldie is wrapped with so much true, pure, unconditional love. Though I wish you never found yourself in this situation, it does make it just a smidge better knowing you have your little Goldie as part of your sensational support system.

12:52 PM  

Post a Comment

<< Home