Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube


This video touched me so deeply at every level.

I was petrified of holding Vic as a baby.  I was even more petrified of anyone else holding my baby.   I had a strict “Look but don’t touch” policy.

“Don’t worry,” people said. “She won’t break.”

Vic’s first known fracture was at the age of 3 weeks.  She sucked her little thumb and fractured it…  By her 3rd birthday Vic had had 41 fractures.

Vic with her right leg in plaster-of-paris

As she grew older she became more careful.  Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18th birthday, Vic believed that she was invincible.

At the tender age of 21 Vic got married.  When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean…  Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…

Vic embraced her pregnancy as she embraced life.  She survived the pregnancy and the birth.

Jared was six weeks old when Vic started battling to pick him up.  Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.

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Baby Jared stayed with us for a couple of week whilst Vic recovered.

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It was the first time in my life that I felt useless, hopeless and helpless.  I could do nothing for my child.  I had been relegated from being “the Mother” to being “the mother-in-law”.  My position in the family had changed forever.

When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.

I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.

I remember Vicky believed that she was invincible…

I remember KNOWING that “Babies break bones…”

 

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“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell


It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks.  The patients have controlled pain and symptoms.  Many caregivers are also looking for a dumping ground.

Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..

It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.

It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.

Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?

Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?

They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?

I read the post of an amazing woman who is suffering from congenital heart failure.  She is in so much pain.  I cried when I read her post.  http://thedrsays.org/2012/11/08/  She replied to a question whether better pain control was possible…..  “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”

I thank God that we are able to make a difference!

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell

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Thank you God 17.12.2012 – One year ago


Thank you God

I just finished a batch of choc-chip cookies.  The house is quiet and sweet smell of the biscuits has permeated the air.  The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped.  It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning.  She lanced the cellulitis abscess on Vic’s arm.  My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face.   He cried with pain.  Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated.  She has a kidney infection.  Kidney infections make her tired. I just checked on Vic, and she is sleeping so peacefully.  She has a serene expression on her beautiful face, and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home.  I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved.  I can now care for my child without having to consider my “position” in her life.  I am able to be her mommy and take care of her. The boys are settled and happy living with us.  We love having them so close to us.  They are such well-behaved, kind and helpful boys!  Before Vic moved home the boys, mainly Jared, had to cook most days.  Now they are able to be children. Life has settled into an easy routine.  We have laughter and fun.  We cry and despair.  We hug.  We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking.  She helped with the preparations for Jared’s 16th birthday party.  Vic passed me the spices when I baked this year’s Christmas cakes.  We laughed when we decided the cake needed another “splash of brandy”.  Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person.  He is my rock and pillar.  He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.  

The Dr Says….


We live in a harsh world. We live in a dog eat dog world where we turn a blind eye to the hungry, homeless, needy and dying.  I have had the most unfortunate experience of living through my daughter’s inextricably slow death.

Many times I would lie next to her in her bed, and wonder how much fear she was experiencing.  She expressed her fear for the boys, her dad and me.  Never did she talk about her fears for herself.

That I read in the blog of an incredible woman, Sandra Callahan.  Sandra suffers from congestive heart failure.  She is living with her impending death.  This brave woman’s journey gave me insight into my child’s heart and mind.  I am eternally grateful to Sandra for her blog, her raw honesty, her friendship and advice.  Sandra selflessly shares her journey with the world.

I have benefitted from her blog.  Vic benefitted from her blog.  Many people have and will benefit from her journey in the years to come…Sandra has externalized her journey by publishing a book.

I was so honoured when her agent asked me to write a review.  Yet it was a difficult review to write.  How do you say you derived “pleasure” from something as heart-breaking as Sandra book?   How do I thank Sandra for telling me what it feels like to die?  How do I thank her for allowing me to understand my dying daughter’s heart?

Sandra, my friend, thank you for your advice over the past two years.  I carry you in my heart and wish we could have met…

I urge you to buy Sandra’s book.  It is an amazing read.  Read about the beautiful, albeit failing heart, of one of the bravest people you will ever encounter.  Click on this link http://www.amazon.com/The-Dr-Says-Sandra-Callahan-ebook/dp/B00GCB2TS2/ and you will be one step closer to understanding the brave heart of a dying woman.

The dr says

http://thedrsays.org/the-dr-says-read-this-book/

Different types of depression


Clinical depression goes by many names — depression, “the blues,” biological depression, major depression. But it all refers to the same thing: feeling sad and depressed for weeks or months on end (not just a passing blue mood).

Depression (mood) as defined by Wikipedia

From Wikipedia, the free encyclopedia

“Dejection” and “despair” redirect here. For the poem, see Dejection: An Ode. For other uses of despair, see despair (disambiguation).



Melencolia I (ca. 1514), by Albrecht Dürer

Depression is a state of low mood and aversion to activity that can affect a person’s thoughts, behavior, feelings and sense of well-being.[1] Depressed people may feel sad, anxious, empty, hopeless, worried, helpless, worthless, guilty, irritable, hurt, or restless. They may lose interest in activities that once were pleasurable, experience loss of appetite or overeating, have problems concentrating, remembering details, or making decisions, and may contemplate or attempt suicideInsomniaexcessive sleepingfatigue, loss of energy, or aches, pains, or digestive problems that are resistant to treatment may also be present.[2]

Depressed mood is not necessarily a psychiatric disorder. It may be a normal reaction to certain life events, a symptom of some medical conditions, or a side effect of some drugs or medical treatments. Depressed mood is also a primary or associated feature of certain psychiatric syndromes such as clinical depression.


Are you depressed?

If you identify with several of the following signs and symptoms, and they just won’t go away, you may be suffering from clinical depression.

  • Feelings of helplessness and hopelessness. A bleak outlook—nothing will ever get better and there’s nothing you can do to improve your situation.
  • Loss of interest in daily activities. No interest in former hobbies, pastimes, social activities, or sex. You’ve lost your ability to feel joy and pleasure.
  • Appetite or weight changes. Significant weight loss or weight gain—a change of more than 5% of body weight in a month.
  • Sleep changes. Either insomnia, especially waking in the early hours of the morning, or oversleeping (also known as hypersomnia).
  • Anger or irritability. Feeling agitated, restless, or even violent. Your tolerance level is low, your temper short, and everything and everyone gets on your nerves.
  • Loss of energy. Feeling fatigued, sluggish, and physically drained. Your whole body may feel heavy, and even small tasks are exhausting or take longer to complete.
  • Self-loathing. Strong feelings of worthlessness or guilt. You harshly criticize yourself for perceived faults and mistakes.
  • Reckless behaviour. You engage in escapist behaviour such as substance abuse, compulsive gambling, reckless driving, or dangerous sports.
  • Concentration problems. Trouble focusing, making decisions, or remembering things.
  • Unexplained aches and pains. An increase in physical complaints such as headaches, back pain, aching muscles, and stomach pain.
  • Negative thoughts. You can’t control your negative thoughts, no matter how much you try
  • Suicidal thoughts. You have thoughts that life is not worth living (seek help immediately if this is the case)

There are many on-line depression tests. These tests should not replace or substitute a visit to a physician. It is only an indicator. http://www.depressedtest.com A physician will have to rule out other serious medical conditions that may cause similar symptoms.

The main types of depression include:

  • Major depression — to be diagnosed with major depression, you must have five or more of the symptoms listed above for at least 2 weeks. Major depression tends to continue for at least 6 months if not treated. (You are said to have minor depression if you have less than five depression symptoms for at least 2 weeks. Minor depression is similar to major depression except it only has two to four symptoms.)
  • Atypical depression — occurs in about a third of patients with depression. Symptoms include overeating and oversleeping. You may feel like you are weighed down and get very upset by rejection.
  • Dysthymia — a milder form of depression that can last for years, if not treated.
  • Postpartum depression — many women feel somewhat down after having a baby, but true postpartum depression is more severe and includes the symptoms of major depression.
  • Premenstrual dysphoric disorder (PMDD) — symptoms of depression occur 1 week before your menstrual period and disappear after you menstruate.
  • Seasonal affective disorder (SAD) — occurs most often during the fall-winter season and disappears during the spring-summer season. It is most likely due to a lack of sunlight.
  • Manic Depression may also alternate with mania (known as manic depression or bipolar disorder).

Factors that can may cause depression include:

  • Alcohol or drug abuse
  • Medical conditions and treatments, such as:
    • Certain types of cancer (pancreas, prostate, breast)
    • Long-term pain
    • Sleeping problems
    • Steroid medications – Corticosteroid medications such as prednisone, which people take for diseases such as rheumatoid arthritis or asthma
    • Underactive thyroid (hypothyroidism)
    • Illegal steroids
    • Amphetamines
    • Over the counter appetite suppressants
  • Stressful life events, such as:
    • Abuse or neglect
    • Breaking up with a boyfriend or girlfriend
    • Certain types of cancer
    • Death of a relative or friend
    • Divorce, including a parent’s divorce
    • Failing a class
    • Illness in the family
    • Job loss
    • Long-term pain
    • Social isolation (common cause of depression in the elderly)
  • Many central nervous system illnesses and injuries can also lead to depression.
    • head trauma
    • multiple sclerosis
    • stroke
    • syphilis

Sources:

http://psychcentral.com/disorders/depression/

http://www.helpguide.org/mental/depression_signs_types_diagnosis_treatment.htm

http://www.nytimes.com/2013/04/07/opinion/sunday/wars-on-drugs.html?_r=0

http://health.nytimes.com/health/guides/symptoms/depression/overview.html

http://psychcentral.com/disorders/depression/

http://www.webmd.com/depression/guide/depression-types

 

Disruptions: Medicine That Monitors You – NYTimes.com


An amazing post!!!!  It feels as if is a hoax!  I would love to hear your thoughts on it!

 

Ye Olde Soapbox

Disruptions: Medicine That Monitors You

By NICK BILTON

 

SAN FRANCISCO — They look like normal pills, oblong and a little smaller than a daily vitamin. But if your doctor writes a prescription for these pills in the not-too-distant future, you might hear a new twist on an old cliché: “Take two of these ingestible computers, and they will e-mail me in the morning.”

As society struggles with the privacy implications of wearable computers like Google Glass, scientists, researchers and some start-ups are already preparing the next, even more intrusive wave of computing: ingestible computers and minuscule sensors stuffed inside pills.

The CorTemp pill, from HQ Inc., has a built-in battery and wirelessly transmits real-time body temperature.HQ, Inc.The CorTemp pill, from HQ Inc., has a built-in battery and wirelessly transmits real-time body temperature.

Although these tiny devices are not yet mainstream, some people on the cutting edge are already swallowing them to monitor a range of health data and wirelessly share this information…

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