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From random to purpose

Until now many of my thougths were random notes fleeting throught my head. I would think hmmmm I should jot that down? Then along came blogging. For many years we 've lived with chroinc illness and everything that comes with it. We don't complain and most often my husband will say that everything is fine. This used to bother me so much. I would ask him how can all be well when we do not know if our son would live or die we did not know if we would pay the next house note or even if there was enough for food?

Then the light bulb went off! Most folks are being polite when they say how are you? They are not asking for your lifes trouble in a 10 minute dissertation of pain and sorrow. For all we know they may just be getting by themselves and have a full plate of problems all their own.

The only thing is you begin to feel lonely within your own trouble. You begin to feel as if you are the single entity suffering these horrible siutations all alone.

It boils down to balance. Mixing the good with the bad helps . We try not to use absolute negatives such as always never etc.
We have to grab each and every happy thing and enjoy it . No matter how small.

I told Marqus a long time ago that there will be folks who care and folks who do not and thats fine.
It is important not to feel defeated when someone doesn't understand or doesn't have time to understand your problems.

The nice thing about a blogg is if someone doesn't have an interest they don't have to read it. It gives the listener a choice . Its not like a face to face or phone to phone conversation. In those situations someone my feel trapped and in an effort not to be rude they listen.

Because of the documentary my thoughts have become more organized. It is a major undertaking to complete a film. Recalling all the past and all the detail can be draining.
But it is long over due . Marqus and those who love and care about us have suffered in silence too long . Now will be our time to spread the word and put voices to silent suffers.

I pray that what we find as we continue this journey can be shared with you.

Thank you for listening Thank you for following these blogs and please share them.

The Flu and Computers

OK by now you are probably wondering what the two have to do with each other? Well I have the flu. You know Murphy's law . So I cant talk because I will cough as if my lung wants to jump out and my body hurts too much to hold the phone ! My bright idea was to catch up on all the blogs I havent written. LOL!!!!! I just got them working again with a new password etc!!!
These darn computers , numbers , log ons passwords etc friends or worst nightmares!!!
AND as we all know a PC virus can always make you wish you had the FLU!!!!!

So after this labor intensive day of nebulizer treatments, attractive flannel bathrobes, all the hot tea, cough medicine and honey a person can drink I am now ready to blog.

We can only hope that the side effects of the wonderful drug prednisone will keep me awake long enough to write. Hopefully that is all it does??? It has been known to turn me into a NUT Job and to cause me to cook dinner at 3am.

By the way have you also noticed that the minute you lose your voice someone HAS to speak with you or asks questions that require more than a nodd?

Ok so the light at the end of the tunnel is this is day 6 of this illness hopefully no more fevers.
Next Marqus got Tammaflu at his doctors visit today yeah !! He doesnt need this.

Well rest well enjoy your dinners please check out our web site it is growing daily.
We have so much more to share after the conference. And I have so much to blog about .

Thank you for listening have a cup of tea and think for Me:)

Five bucks and a cup of tea

It is amazing what pleasure can be derived from five bucks and a cup of tea. I was in Walgreens and picked up on clearance a speaker in a little zipper case for 5 bucks. This little thing runs on 3 AAA baterries and I can plug my I-POD into and wow music!

I am taking a leave of absence form the news .

A cup of herbal tea and all is right in the world at this minute in time.

Peace a cool breeze and the quiet of the night.
Music sweet music.

Life is so fast we spend too much time sweating the small stuff.

I am guilty of endless worry.
My father in law who I deem wise would always tell me to let go and let God! He is currently trapped in the coils of his mind(demenita) and can no longer have these conversations with me . The conversations that were so full of hope and promise. Now I can have them with our kids . I will always be grateful to him for that.I am finally catching on.

I believe that this five bucks and cup of tea has lower my blood pressure , put a smile on my face and I get to sleep pretty good tonight.

We come from a family of music . It soothes the soul, it unites , it heals ,it is a universal language, and recently I forgot to listen.
WOW never forget to hear your favorite songs .
The earth is a song everything in it has a beat , a pulse , and a tone.
Yesterday I closed my eyes and heard the rhythm of the highway then the train added the base and the bird chimed in it was awesome.

In a world that has sadness as a reality base we forget to find the beauty of the simplist pleasures.

Five bucks and a cup of tea thats all I needed to enjoy a symphony!

God Bless you and find your cup of tea.

"False Hope"

The other day my sister called to check on our brother. I was telling her about his apartment and she was worried that I was doing too many pointless things because he will never come back to his place.

She stated that I was giving him "false hope".

Here are my thoughts.
I am sure that after multiple conversations ,very frank ones with drawings my brother is well aware of the finality of his condition .

However, where is it written that dying stops you from dreaming.
Maybe his false hope or stubborness is his dream to ease the long hours of waiting for the week ,the day, the hour ,the minute before the inevitible.

We can all be assured of one thing ,we will be called home someday.
What hurts and what we will miss is the familiar. The family the friends
our pets our prized things that may have bought us joy.

What makes us worry is, will we hurt? will we suffer ?we will struggle for our last breath?.

What makes us sad is knowing that our time to see smiles sunshine and hold on to anything and or anyone that we love is fading to black.
What makes us sad is the tears that will be shed when that last goodbye is said. The pain sadness and sorrow that will be felt.

Our consolation ,we will all be together in God's house or wherever ones beliefs take them.

Our mind may be fighting our body may or may not join in.

I believe we are here on temporary loan alloted so many precious heart beats.
Allowing someone to think and hope and dream is not false hope. People have different ways of coping .
I also understand that some folks are realist like my sister and I know it may seem pointless to clean my brothers place and pointless to do his laundry.
BUT when we go to the nursing home and tell him about our cleaning adventures and how the little kittens messed up this and messed up that he smiles he fusses that I better not put that crock pot in the freezer and he is mad that H&R block charges 40$ for a tax return.

I believe he feels his business here is not done.

Marqus has been distressed by my brothers illnesses and death of the younger one last year. Both brothers had and have terminal cancer.
He is again praying for a miracle .
Marqus has a certain bond with people who are ill.
His mortality is in question daily.
Last year when my 39 year old brother died Marqus was so hurt that his kids would not be able to spend time with him anymore.
He said he could feel the pain of his wife .
Marqus told me he looked into my older brothers eyes and saw the "lonely hospital eyes ". These are the same eyes that Marqus has when you have to be left there alone not knowing if you will see your family again.

We have had our share of pain these past few months.
No false hope just sad painful realities that make us hold on for dear life to every small shred of joy ,laughter, sunrises , nature , freinds ,family the list is endless.

Everything you may think is a nusiance today may be a hope or wish tommorrow.
My brother cooked tons of food with the hope he could swallow it . He loves to eat.
Marqus cried so much this weekend with sadness for lost friends and family . He is hoping that his dreams will become realities before he is called home.

I haven't had time to do much dreaming I've been kind of busy.
But that doesnt mean I dont have a huge smile when I think about that trail ride on ONYX into the sunset.

As Always thank you for sharing my blogs .
Pass this along.
Break the Sickle Cycle www.sickcellsfilm.com

The down side of living , loving ,laughing , is the pain you feel when you have to leave.
xoxoxs

What If

Most of my previous blogs are about our family's struggle with Sickle Cell Disease but this time I am faced with a new situation.
My younger brother died of cancer last year. Now this year my older brother has terminal cancer. There are decisions to be made that are uncomfortable to think or talk about. Because I am a nurse doesn't make this any easier. Most people have heard of Living Wills or advanced directives. This is where you put your wishes for care and end of life decisions onto paper. The problem is most of us have not done so . I do not have a living will neither does my husband.
Talking about what treatments you want or don't want plus where you will be buried etc is tough . It is so much easier to just go on each day and ignore this part of life.
My brother is still of sound mind and I hope he will continue to tell me what he wants or doesn't want. It just needs to written down.
I know from being a nurse for 30 years that things are so stressful at a persons time of death having wishes clearly communicated is ideal. Having a living will and making end of life care decisions doesn't mean that a person receives less care. It guides everyone for when the person can not speak for themselves.
As health care professionals we are in-serviced about this etc. Thats all fine except when its your own loved one then the discussion is tough. My brother loves life and over the last 3 weeks or so his worst fears have come to truths.
There are so many laws that are different in each state and it is important to know them.

When he was transfered from the hospital to the nursing home The papers that showed it was ok for us to have his information were not yet in the chart. The nurse could not even tell me if he made it there safely. That is called HIPPA law. Luckily I had a copy in my purse and could fax it to them.

This is important becuase if we are in an accident or are ill and want someone to know we must list a person or persons to have access to our information.
Can you imagine lying in a hospital for days or weeks and no one knows where you are because the hospital by law cant tell anyone?

If you are sending your child to college it is the same. If they get sick eventhough you pay the health insurance and the bills you will not be able to find out their condition unless they have you listed on their forms.

Now to add stress on top of stress the state of Wisconsin requires you to go thru each and every possible senario and each point has to be in writing. They do not recognize wives and adult children and siblings in the decision making each person has to be listed by the individual while they are of sound mind.

You feel so much pressure for your loved one to make their end of life wishes known. It is like a race with the clock.

Going thru this with my brother makes me realize how out of order my own affairs really are.

We have to sit down and ask each other what do you want?

We do not know when God will call us home.
Preparing the earthly stuff for this journey will no doubt make it easier for those we leave behind.

As always I ask for your help in breaking the Sickle Cycle log on to www.20kfilms.com check out our documantary in the making called Sick Cells , spread the word about this disease and continue your prayers.
Together we all will make a difference.

Thank you for listening .
Have a blessed day.