lifts my spirit
opens my heart
moves my body
To fall into
fall in love with
& read again
& some again
lifts my spirit
opens my heart
moves my body
On the coast today, it was dark and gloomy with frequent and periodic heavy rain most of the day. Temperatures hovered close to the 60 degree mark -- a little warm for the season.
A young mom was walking toward me from the mall pushing a carriage with a toddler. She had no cover from the rain.
I offered to cover her with my umbrella and stay with her as she walked to her automobile.
Well, the young woman only reluctantly allowed my assistance. I was prepared to stay with her and cover the child while she opened the doors and lifted the child into the car. But I was quite summarily dismissed. And I realized only later as I walked away that she was suspicious of the assistance.
So I wondered: what must your life be like if you cannot trust a 5 foot, 63 year old grandmother, who looks like this:
Oh. You caught me. I wasn't wearing my crown.
Because it was needed.
Because she was there and had the skills.
They were so young, those WWII warriors. He was only 24 when he wrote this letter. They were married in 1942 but there wasn't much time for them to be together, to know each other. The war was on; he was married in his uniform.
Life is too short for drama: I have witnessed argument after argument on the CLL boards (ACOR and the Forum) and I just cannot understand the motivation, the rationale for such behavior. The newest board, the CLLC Friends, was started nearly a year ago because of the defection of several members who had a falling out with other members. Now, another member of the Forum is threatening to leave because she feels her opinions cannot be shared without sarcasm or rancor.
Life is too short for drama and petty things: After all, what is being shared is information ~~ information that we all need to know. Other times what is shared is opinion and/or personal experience. But whatever they are, they are just words on the screen. They can so easily be 'erased' if found offensive, upsetting or frustrating. One has the ability to just walk away in a very real sense. So why not? What does motivate people to harangue over small details and personal opinion or interpretation?
We need to forgive quickly: We, the members, are all the same. Our great equalizer is the disease we share. But that just doesn't seem sufficient of itself to keep people from hurting one another.
Last summer when I was hungry for information about CLL, I found the CLL Forum. Actually, I started looking for information even before I had a diagnosis, when all I had was a phrase (small clonal population in bone marrow and an appointment to see a hematologist in Boston. Recently, I heard someone say they had a degree from Google U. which is my first choice when I want to know something. So, I googled "small clonal population" and up popped a list that included many references to CLL. It was DrM. who gave me the diagnosis; it was also DrM. who advised against using the internet as an information source on CLL saying that the information on the web was "old" and "frightening". I didn't heed his advice.
I quickly became a member of the Forum, a big step for me as I had never done any kind of on-line bulletin board or chat. I lurked awhile and then took the plunge and what a response! I felt wrapped around by the warmth and friendliness of strangers ~ ~ and I learned about my disease, I began to feel less alone. Over the months, I saw and experienced the wonderful generosity of spirit as members shared their personal stories, offered advice and made suggestions. There is a great wealth of knowledge among its membership and it freely shared. One feels almost daily to be on the cusp of what is new and current in CLL. The present disagreement is about the efficacy of alternative treatments or holistic interventions and whether there is sufficient science (data) to support their use. Clearly, I just don't understand why we just cannot leave our members to their own discretion. Let those who are interested in such topics expound on them in the thread that is allocated to it. If one is not interested, one needed visit the thread.
Life as an Introvert, Intuitive, Feeler, Judger
People of this type tend to be:
Hope is the thing with feathers
Original art uploaded by Pat Spiller
from an altered book in progress, 2007
In September, Larry and I took the Uncle Oscar from Rye Harbor and made for the Isles of Shoals for our almost-annual Mid-Week Retreat on Star Island.
All summer long, there are weekend and week-long conferences on Star. But our favorite is Mid-Week II, typically held during the final week before the entire island is buttoned up for the winter. At a usual summer conference on Star, there is a lot of action, families doing, learning, playing. But at Mid-Week II, there are few activities: none planned, none mandatory. Breakfast, lunch, and dinner. Naps. Rocking on the wide veranda in the old fashioned chairs. Reading. Dreaming or just looking on this island world with a soft gaze.So, we retreated once again to the tiny island that could be miles and miles away but isn't; it could be in another century, but isn't. On Star, there are no roads, no automobiles save the one utility truck that runs from the dock to the hotel with supplies. There are no newspapers, no radio or TV, no telephones or computers. It is peaceful and quiet. The Atlantic laps the shore. Lobster boats working or a sail boat doing its water ballet. Thats all. There are no street lights and when evening falls the island is dark; coastline across the water looks like a necklace of jewels.
Each day on Star begins and ends with Chapel. A welcoming, peaceful, place of communion. Each time I leave, it is with a lighter heart. In the evening, along about 8:30, folks assemble on the porch to receive their lighted lanterns. We walk single file, silently up the little hill behind the Oceanic Hotel to the Chapel. The music beckons. Each person enters the tiny chapel and hangs his lantern on the wall and the room is soon flooded with a soft light. We sing. We listen. We pray. We commune in peaceful silence.
Prednisone is a corticosteroid used to reduce pain and inflammation throughout the body for people with severe joint pain, skin sores, eye disease, or central nervous system symptoms and is seful in early stages of disease and for acute severe flares but are of limited use for long-term management of central nervous system and serious eye complications.
Immunosuppressive drugs help control an overactive immune system which occurs in Behçet's disease, reduce inflammation throughout the body, and can lessen the number of disease flares. Doctors may use them when a patient has eye disease or central nervous system involvement with the Behcet's; they also have serious side effects. Doctors may use one or more of the following drugs depending on specific symptoms: Azathioprine (Imuran) is used to suppress the immune system it is now used for people with Behçet's disease to treat uveitis and other uncontrolled disease manifestations. This medicine can upset the stomach and may reduce production of new blood cells by the bone marrow. Chlorambucil is used to treat uveitis and meningoencephalitis. Cyclophosphamide is referred to as a cytotoxic drug. Unfortunately, normal cells also are affected, and this results in serious side effects. Cytoxan also suppresses the immune system and is also referred to as immunosuppressive. Cyclosporine when used by patients with Behçet's disease reduces uveitis and uncontrolled disease in other organs.
So here is what I now understand: CLL and SLL are biologically and morphologically the same disease but present differently: CLL in the blood and SLL in the lymphatic system.