Wednesday, April 15, 2009

Spring Bliss Interrupted

Rhubarb - the official signal of Spring.

Trays of infant lettuce and herbs.

Miss Kitty enjoying warmth in the greenhouse.

I have waited so long for the arrival of these spring-washed days of sunshine. What an experience of enormous relief!
All over our property all those winterized grey-brown branches are receiving the powerful magic of the green unfurling process.
Equally as exciting is a visit to our greenhouse that not long ago was inaccessible because of snow and ice. Now, the greenhouse contains trays of infant lettuce, herbs, tomatoes and peppers smiling at the sunlight. (The greenhouse also contains Miss Kitty. She adores the warmth).
We love rhubarb. I make a strawberry, pineapple and rhubarb jam for my husband. I love rhubarb marmalade! So, both products are made here.
I also freeze little containers of stewed rhubarb to serve thawed on our winter bowls of cereal.
Of course we enjoyed rhubarb pies. My husband likes pies with "runny juice." I don't. I like rhubarb custard pie. So, both types are made here.
Obviously, rhubarb matters.
Therefore, seeing its shoots begin their climb out of the earth is almost enough to start me salivating.
Rhubarb is the official signal that marks the true beginning of this all important Spring season.
I will miss a day of precious sunshine tomorrow as I need to take my frail elderly mother to hospital for a blood transfusion. She has essential thrombocythemia.The monthly blood transfusions give her a modest measure of relief.
Every aspect of my mother's life has been compromised by this disorder.
This disorder has 37 common symptoms and my mother experiences all of them. Frustratingly, she refuses to grasp that the symptoms are a collection of things covered under one umbrella, as this has never been properly explained to her. Therefore, each symptom's onset required doctor's office visits, lab work, x-rays, specialized tests, visits to out-of-town medical specialists and on and on.
My mother is very brave in the face of all of the terrible daily symptoms she experiences. Her pain is physically and emotionally exhausting.
It would help enormously if someone in a position of medical authority took the time to explain the collection of symptoms to my mother -- and explain to her that each symptom does not necessary herald a new disease. But rather, that the symptoms are part of the whole. Her stress level (and mine) would be much less. (Not to mention it would save the medical system bunches of money).
All these years into the disorder, she has been offered only small bits and pieces of information from her doctor or hospital staff. That leads to the obvious "well, the doctor never said that..." when I tried to explain that something she is experiencing is part of "the collective."
I have been able to access a limited bit more information from oncology professionals. But I would dearly love to speak with others dealing with this disorder -- to find out what they are receiving for treatment, how they cope with the symptomology and above all else, what they know about the history of the disorder.
As they say on that BC television channel "Got Knowledge -- share it." Please.


Rebecca J. Lubitz said...

Hi, I have Essential Thrombocythemia and would love to answer any questions you may have regarding the disease and treatment. I am also a nurse and lead a local MPD Education and Support Group. Write or call anytime.

mkfore said...

There are two support groups on line for MPN/ET. They are a GREAT sourse of information and support. Google MPD support. MPD (Myeloproliferative disorders) has recently been changed and is now MPN (Myeloproliferative Neoplasm).

Darcie said...

It is finally spring here in Saskatchewan also. I have my trays of flowers and veggies under lights in the basement, but I was digging dandelions out of the garden yesterday. The onions and lettuce will go into the ground pretty soon!