Wednesday, November 10, 2010
Friday, November 5, 2010
Tuesday, November 2, 2010
Road Trip
We recently attended the 38th annual Sickle Cell Disease Association Convention. We travelled to Maryland for a day. September marked the 100th year of the discovery of Sickle Cell Anemia in the western world. The convention for me personally would mark the first time I shared the same space with a large group dedicated to SCA. The speakers shared their stories. The convention allowed us to purchase a table for a day to share the documentary. Marqus was unable to travel his counts were low and he was in too much pain.
One common theme shared by so many was the lack of understanding by health care professionals and the lack of services for the 16-25+ age group.
Also many participants talked about a "death date". They felt they were written off by the health care system and were given hopeless outcomes for life. Many parents shared with us that they were told not to expect their child to grow up.
It was magnificent to meet folks with SCA that were 50-63 years old!
With all the marvels that modern medicine holds there doesn't need to be a "death date"
This is not to say that the complications from this disease will not kill you . I am here to tell you as a parent first , a RN for 30years second we are well aware of every potentially fatal complication.
Marqus has had several by age 27yrs.
We met not only nurses and doctors but speech pathologist , occupational therapist, social workers , community advocates ,teachers and an attorney that has SCA.
The concerns were unanimous why are the routine services that are offered to restore function and or minimize disability not routinely applied to persons with SCA.
I think I have a partial answer. First we can not count the times people say "oh yeah I had a friend or relative die from that" "I didn't know Sickle Cell did that" I remember my own mother in law telling me Marqus would "out grow it" boy I wish she would have been right.
This disease again has no voice in a prime time media slot that will raise awareness and highlight the struggle.
I especially feel that the hardest age group is 16-25+ . This group is expected to go to college then graduate get a job, start a family , have a career , be productive members of society etc etc etc etc. These expectations are difficult enough for a healthy person . Imagine a young person with an illness that can render them incapacitated for weeks at a time.
This disease has the potential for fatal consequences if pushed to its capacity. BY that I mean it must be managed properly.
Marqus can do most anything but he has learned his bodies limits and works within that frame.
It is not wrong for the person with SCA to have to accomplish whatever they want at their own pace.
Other persons with disabilities or challenges have many services for them to succeed.
Persons with SCA must be afforded the same without question.
Here are examples. When Marqus was younger he developed heart failure . He was approximately3 or 4 years old. He began squatting developing blue club like finger nails and was worn out with simple activities. He also had several bouts of dactilytis(small blood vessels of the hands and feet are blocked with sickle cells and it causes pain and swelling ).
My insurance was willing to pay for a push chair . He was too large for me to carry and we had no idea what the outcomes would be with walking. We commuted 30 plus miles one way to the Children's Hospital.
We arrived at the clinic one day and one provider had a smart comment about his chair.
Now I ask the question. If he looked physically impaired would their have been any doubt that he needed this chair? The answer is NO.
Not too long ago when he had an admission for severe pain , low counts and I think fever there was a rumor started on the floor that he was just a difficult spoiled brat and did not want to get cleaned up.
The real reason he could lay on his right side was because of AVN (avascular necrosis of his acetabulum). This translates to death of the cup of the hip joint from lack of useful circulating blood cells due to SCA. Also his abnormal heart rhythmn (beats) kicked in and his heart rate was as high as 150 (normal 60-100).
We washed him up explained to the tech and anyone else that would listen that he will get up and run out of the hospital as soon as he can. He is not the type of person that is attention or drug seeking.
We also asked them to review his history and if he says that he feels like his bones are crushing when he moves call the doctor do not assume anything.
He was in the hospital for 40+ days he went home 50% weight bearing used his walker took a medical withdrawal from class recovered and went back to the business of living.
NOW I ask this question if he had a different diagnosis would that rumor have been started.?
Would anyone have questioned the validity of bone metastasis?(that's when cancer spreads to the bones). No.
Meeting everyone at the conference gave us the strength to continue our mission.
There is so much work to be done.
I will continue to share the information we gathered .
I hope and pray we can network with the many folks that want this disease to be managed with respect and dignity. The many people who are exhausted from the silent suffering.
I pray that we can unite our voices . There is strength in numbers.
PLEASE support us go to our web site http://www.sickcellsfilm.com/ and help. PLEASE follow our blog and leave your feed back.
What started as a class project for Marqus will create a change for many. No more SILENCE!!!!
We are born then we die BUT in between we must LIVE!
Thank You for listening .
One common theme shared by so many was the lack of understanding by health care professionals and the lack of services for the 16-25+ age group.
Also many participants talked about a "death date". They felt they were written off by the health care system and were given hopeless outcomes for life. Many parents shared with us that they were told not to expect their child to grow up.
It was magnificent to meet folks with SCA that were 50-63 years old!
With all the marvels that modern medicine holds there doesn't need to be a "death date"
This is not to say that the complications from this disease will not kill you . I am here to tell you as a parent first , a RN for 30years second we are well aware of every potentially fatal complication.
Marqus has had several by age 27yrs.
We met not only nurses and doctors but speech pathologist , occupational therapist, social workers , community advocates ,teachers and an attorney that has SCA.
The concerns were unanimous why are the routine services that are offered to restore function and or minimize disability not routinely applied to persons with SCA.
I think I have a partial answer. First we can not count the times people say "oh yeah I had a friend or relative die from that" "I didn't know Sickle Cell did that" I remember my own mother in law telling me Marqus would "out grow it" boy I wish she would have been right.
This disease again has no voice in a prime time media slot that will raise awareness and highlight the struggle.
I especially feel that the hardest age group is 16-25+ . This group is expected to go to college then graduate get a job, start a family , have a career , be productive members of society etc etc etc etc. These expectations are difficult enough for a healthy person . Imagine a young person with an illness that can render them incapacitated for weeks at a time.
This disease has the potential for fatal consequences if pushed to its capacity. BY that I mean it must be managed properly.
Marqus can do most anything but he has learned his bodies limits and works within that frame.
It is not wrong for the person with SCA to have to accomplish whatever they want at their own pace.
Other persons with disabilities or challenges have many services for them to succeed.
Persons with SCA must be afforded the same without question.
Here are examples. When Marqus was younger he developed heart failure . He was approximately3 or 4 years old. He began squatting developing blue club like finger nails and was worn out with simple activities. He also had several bouts of dactilytis(small blood vessels of the hands and feet are blocked with sickle cells and it causes pain and swelling ).
My insurance was willing to pay for a push chair . He was too large for me to carry and we had no idea what the outcomes would be with walking. We commuted 30 plus miles one way to the Children's Hospital.
We arrived at the clinic one day and one provider had a smart comment about his chair.
Now I ask the question. If he looked physically impaired would their have been any doubt that he needed this chair? The answer is NO.
Not too long ago when he had an admission for severe pain , low counts and I think fever there was a rumor started on the floor that he was just a difficult spoiled brat and did not want to get cleaned up.
The real reason he could lay on his right side was because of AVN (avascular necrosis of his acetabulum). This translates to death of the cup of the hip joint from lack of useful circulating blood cells due to SCA. Also his abnormal heart rhythmn (beats) kicked in and his heart rate was as high as 150 (normal 60-100).
We washed him up explained to the tech and anyone else that would listen that he will get up and run out of the hospital as soon as he can. He is not the type of person that is attention or drug seeking.
We also asked them to review his history and if he says that he feels like his bones are crushing when he moves call the doctor do not assume anything.
He was in the hospital for 40+ days he went home 50% weight bearing used his walker took a medical withdrawal from class recovered and went back to the business of living.
NOW I ask this question if he had a different diagnosis would that rumor have been started.?
Would anyone have questioned the validity of bone metastasis?(that's when cancer spreads to the bones). No.
Meeting everyone at the conference gave us the strength to continue our mission.
There is so much work to be done.
I will continue to share the information we gathered .
I hope and pray we can network with the many folks that want this disease to be managed with respect and dignity. The many people who are exhausted from the silent suffering.
I pray that we can unite our voices . There is strength in numbers.
PLEASE support us go to our web site http://www.sickcellsfilm.com/ and help. PLEASE follow our blog and leave your feed back.
What started as a class project for Marqus will create a change for many. No more SILENCE!!!!
We are born then we die BUT in between we must LIVE!
Thank You for listening .
Wednesday, October 27, 2010
News: Help the film Proceed and Be Bold!
https://www.kickstarter.com/projects/20kfilms/proceed-and-be-bold-dvd-reprint
Tuesday, October 26, 2010
Friday, October 8, 2010
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.
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.
Thursday, October 7, 2010
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:)
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:)
Thursday, July 1, 2010
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.
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.
Sunday, June 27, 2010
"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
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
Sunday, June 13, 2010
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.
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.
Wednesday, May 5, 2010
The last 30 days
Once again Sickle cell rears its ugly head. Marqus just spent close to 30 days in the hospital. His blood counts dropped . His liver is swollen and full of sickle cells and iron. It has some level of sclerosis. Just as we get our minds in gear for yet another stent in the hospital a reality check comes our way. His friend D 'Angelo dies.
The boys had just talked to each other and had some lunch. D was up and walking around . He had been there a couple of weeks before Marqus.
D told us he had just developed heart failure . I told him Marqus was diagnosed at arouund 4 years old with CHF congestive heart failure.
We planned to have a round table discussion about it when both boys were out.
Then I get a call from Marqus he calls me at work and says Mom D is dead.
I asked him over and over what what do you mean.
Marqus was sending a text so they could plan for later and go to the movies.
He thought D was at home. It turns out the nurse had went into the room to have D sign his discharge and he was dead!! 19 years old so proud of his new dorm room ,so proud but also so afraid of this horrible killer that stalks the body and kills it one little subtle piece at a time.
The killer without a voice the killer without a face without a ribbon the killer that everyone says OH I didnt know Sickle Cell does that!!!
I am grateful that Marqus was so sedated with pain meds that he did not hear the code blue.
We all cried so much. The hopsital took care of Marqus they sent the chapland I had him see psych.
I can not describe the pain I felt I began crying so hard at work I couldn't control myself. I know this was not my son but I can not really tell you about this pain.
I think I need psych. I feel like a cloud of gloom is hoving and I need a strong wind to blow it away. Everything but the business of survival seems trivial.
As mother's day approaches the overwhelming feeling to cry and cry and cry comes back. I cant fully explain this but I will try.
We carry our babies for nine months we know when by their cry they are hurt we look into their eyes and know something is wrong.
We can tell in their voice even over the phone that they are in pain or afraid or sick.
When they have that pain we feel it inside as well. we are moms until the day we take our last breath.
I could feel the sadness of the hospital staff . I am a nurse I have felt this as well when I lose a patient. I feel it now evertime I see a kid come back from Iraq injured sometimes beyond repair. Their moms bring them to the hospital.
I tell them I understand and I mean it . My sons disease is like war in is body. UNpredictable waiting to take his life.
.
Marqus always tells me if he wasnt ill he would be a solider . He would be a good one . Marqus has courage and he is strong.
He reminded me that D is in a better place with no more disease.
I put on my game face go out into the world and do what I have to do.
I think only my dog and cat really have all the details of how hard that is sometimes.
I dont bother folks with my pain they dont really want to hear all our troubles it is a burden and in todays world there are so many struggles.
We pray thats the way to get through.
Imagine.... pain so bad that there are not enough tears to cry. Pain so bad that dying may seem better. Pain that comes on sometimes without warning that has the sound of agony. Your tiny blood vessels are blocked circulation is begining to cease little by little each cell is dying little by little some organ is going to take a hit and fail . Little by little without help
without research, without hope you fade to black.
BREAK THE SICKLE CYCLE www.nih.gov educate all about the disease.
Please please please pass along this and all the other blogs.
Watch for our documentary SICK CELLS . The message has to be heard.
no more "OH? I didnt know sickle cell causes all that?"
Help US.
Thank You for listening
The boys had just talked to each other and had some lunch. D was up and walking around . He had been there a couple of weeks before Marqus.
D told us he had just developed heart failure . I told him Marqus was diagnosed at arouund 4 years old with CHF congestive heart failure.
We planned to have a round table discussion about it when both boys were out.
Then I get a call from Marqus he calls me at work and says Mom D is dead.
I asked him over and over what what do you mean.
Marqus was sending a text so they could plan for later and go to the movies.
He thought D was at home. It turns out the nurse had went into the room to have D sign his discharge and he was dead!! 19 years old so proud of his new dorm room ,so proud but also so afraid of this horrible killer that stalks the body and kills it one little subtle piece at a time.
The killer without a voice the killer without a face without a ribbon the killer that everyone says OH I didnt know Sickle Cell does that!!!
I am grateful that Marqus was so sedated with pain meds that he did not hear the code blue.
We all cried so much. The hopsital took care of Marqus they sent the chapland I had him see psych.
I can not describe the pain I felt I began crying so hard at work I couldn't control myself. I know this was not my son but I can not really tell you about this pain.
I think I need psych. I feel like a cloud of gloom is hoving and I need a strong wind to blow it away. Everything but the business of survival seems trivial.
As mother's day approaches the overwhelming feeling to cry and cry and cry comes back. I cant fully explain this but I will try.
We carry our babies for nine months we know when by their cry they are hurt we look into their eyes and know something is wrong.
We can tell in their voice even over the phone that they are in pain or afraid or sick.
When they have that pain we feel it inside as well. we are moms until the day we take our last breath.
I could feel the sadness of the hospital staff . I am a nurse I have felt this as well when I lose a patient. I feel it now evertime I see a kid come back from Iraq injured sometimes beyond repair. Their moms bring them to the hospital.
I tell them I understand and I mean it . My sons disease is like war in is body. UNpredictable waiting to take his life.
.
Marqus always tells me if he wasnt ill he would be a solider . He would be a good one . Marqus has courage and he is strong.
He reminded me that D is in a better place with no more disease.
I put on my game face go out into the world and do what I have to do.
I think only my dog and cat really have all the details of how hard that is sometimes.
I dont bother folks with my pain they dont really want to hear all our troubles it is a burden and in todays world there are so many struggles.
We pray thats the way to get through.
Imagine.... pain so bad that there are not enough tears to cry. Pain so bad that dying may seem better. Pain that comes on sometimes without warning that has the sound of agony. Your tiny blood vessels are blocked circulation is begining to cease little by little each cell is dying little by little some organ is going to take a hit and fail . Little by little without help
without research, without hope you fade to black.
BREAK THE SICKLE CYCLE www.nih.gov educate all about the disease.
Please please please pass along this and all the other blogs.
Watch for our documentary SICK CELLS . The message has to be heard.
no more "OH? I didnt know sickle cell causes all that?"
Help US.
Thank You for listening
Wednesday, March 3, 2010
News: TLC's T-Boz speaks out in PSA to help people with SCD
http://usatoday30.usatoday.com/life/health/doctor/lhdoc233.htm
"Sick Cells" Taping: Improvising a mic stand
We just taped an interview with Marqus and his mother, Fran, and being minus a mic stand, Fran suggested we improvise with Marqus' IV stand. Five minutes and some velcro strips later.
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