reach_out – Page 2 – Dr Affie Adagio

E.B. (Epidermolysis Bullosa)

In Australia you can help by reaching the support people for E.B (Epidermolysis Bullosa) at DebRA Queensland. As a result of my post about Butterfly Day and E.B. there was a comment by Gena which I believe will help the E.B. campaign, so I’m including her comment in full here. Hopefully this will inspire people to become active in Gena’s work too. Children especially suffer such pain and life threatening illnesses because of Epidermolysis Bullosa so please consider pledging your help.

Comment by Gena:

Hello! I receive “google alerts” for anything about EB, and your blog arrived in my alert today. I just wanted to write and say “THANK YOU!” for spreading awareness about EB! My Mom suffered from Recessive Dystrophic EB, Hallopeau-Siemens subtype. She was a marvelous woman, and a warm and caring mother to me and my two siblings. She is one of the few with her severe subtype to have children, and we are all EB-free. She lived to the age of 65, and serves as an inspiration to others with EB because of her long life and courage in the face of this disease. She endured many infections from chronic wounds, had many surgeries to improve her mittened hands, developed squamous cell carcinoma which resulted in amputation of an arm and a leg, and yet she loved life and was in all ways a child of God. I wrote an article after her death for the DebRA organization, which you can view here: www.thedenslaws.com/personalstories.html

In the U.S., I am working with volunteers to pass a Bill for National EB Awareness Week, Bill H.RES.335. The companion Senate Bill, S.RES.180, has already passed. If one of your readers knows folks in the U.S., they can write, fax, email or phone the House Majority Leader, Speaker of the House, and Majority Whip, and ask them to bring this Bill to a vote under the 109th Congress, before they finish in December. They can ask the same of their own Congressperson, and they can get all contact information at www.house.gov or www.congress.gov.

I also work with DebRA International, helping people in countries to find resources. Currently, I’m working with a family of four siblings in their 20’s in Iraq who have no bandages or wound care treatment, to go to Israel to be diagnosed and receive instruction on bandaging, and a couple in Pakistan with a 2-year-old son – all have a more severe subtype of EB. There is just not enough help for these people, and spreading awareness as you have done is a great gift to our community!

Thanks for the opportunity to leave a comment! Gratefully, Gena Gruschovnik

Butterfly Day

Today I heard on the car radio that it is Butterfly Day for kids suffering from E.B. It was the first time I had heard of this disease and so I looked at their website here and in the United States [be prepared for disturbing pictures]. I was appalled at what small children go through with Epidermolysis Bullosa as their skin blisters horrendously and causes them infections and tremendous pain.This is a rare genetic disorder and affects all nationalities.

The wounds vary in severity and although they resemble burns, they don’t heal as burns do. The child with E.B. cannot ride a bike, skate, or participate in sports because normal play causes chronic sores which are sometimes covering 75 percent of the body and can be life threatening. These children are confined to a diet of only liquids or soft food to cope with blistering and scarring which occur in the mouth and esophagus.

Their fingers and toes can fuse due to scarring, leaving deformities affecting their ability to function. Their lives can involve being constantly admitted to hospitals for wound treatment, blood transfusions, biopsies and surgeries. They often have sight problems because their eyes blister. Chronic anemia is another symptom and this reduces energy and retards growth. Life beyond 30 years is not expected.

I found that in Australia there are attempts to raise money and support services for children who suffer with E.B. and for their families. So I hope that I can raise awareness about this devastating illness through my website to help their fundraising and make their plight easier.

I am sure that you too will find it as heartbreaking as I did when you visit the E.B. websites.

Lift our spirits

There are clouds that are dark and gloomy and there are clouds that are light and fluffy which lift our spirits to look at. That is exactly how we can see some of life’s experiences. Some are dark and gloomy but once we have sat and experienced the depth of the gloominess then we need to reframe the experience and make the best of it. Even the worst experience can have a better outcome – one door closes and another opens.

he was so gloomy because he lost his job
as we sat and assessed the pros and cons
of the situation and its implications
he seemed to be more relieved
because he wouldn’t have to put up with
the stress he had faced before and
he had felt unappreciated too
as he realised that this was in fact
going to work out better for him
his spirits were lifted and he
looked forward to what the
new day would bring

Nothing is as it appears

The jaguar is popular and as people admire its beauty they forget how dangerous it can be. Nothing is as it appears. Within seconds it’s capable of ripping its prey apart, as many animals can do. To a certain degree the same can be said of the human animal. Usually humans try to present a persona which is attractive, lovable, and successful so that they can get what they want. Some though are dangerous because they can easily become violent, either emotionally or physically or both. Prevention is best – we need to go gently into a new relationship until we are sure of the other person’s temperament. We also need to be prepared to get out of the relationship fast if it proves inappropriate and not wait until it’s so dangerous that we can get hurt.

they came to see me and by the end of the session
it became apparent that he was not willing to change
even though he had violent tendencies
and she was not ready to leave him
when they came back to see me I made it clear
that I could not see them together any more
because it was as though I was holding her hand
while he continued to be violent with her
I recommended that she contact the Helpline
for this type of dangerous behaviour and
stressed that her life depended on
her taking urgent action, my words annoyed him
she came back months later and wanted
to undergo therapy on her own as
she had legally removed him from her life
she had a pattern of attracting similar types
and she wanted to stop, so we began the work
today she lives the life she’s always wanted

Panic

Today I’m writing about panic as the cause of whether we handle situations well or not. Panic is fuelled by anxiety and different people react differently to stressful situations. The need to fight or flight is natural and some of us under such circumstances will appear cool, calm and collected making the necessary appropriate decisions which resolve the emergency. Others may become flustered and make mistakes that can be fatal. Then again people may experience both reactions at different times.

The best solution is to be prepared by developing relaxation techniques beforehand, like breathing evenly in a circular fashion; repetition of words to steady thought patterns, e.g. “I can do it, I can do it” over and over again (otherwise known as affirmations or self hypnosis); asking for help or making a loud noise, if possible and so on.

PANIC DEFINITION: in American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4th Edition [DSM-IV]. Washington, DC, American Psychiatric Association, 1994, p. 394-403
The symptoms the DSM-IV list are:

palpitations, pounding heart, or accelerated heart rate
sweating
trembling or shaking
sensations of shortness of breath or smothering
feeling of choking
chest pain or discomfort
nausea or abdominal distress
feeling dizzy, unsteady, lightheaded, or faint
derealization (feelings of unreality) or depersonalization (being detached from oneself)
fear of losing control or going crazy
fear of dying
paresthesias (numbness or tingling sensations.
chills or hot flushes

This definition of panic is from (and for more information) (Ask Tog)

Maintain vigilance

One human weakness is the need to stop doing what works when things are going well. Usually people who have found their sanity by taking the relevant medication will, against medical advice, stop taking the medication when they feel well, with horrendous consequences. Others will find solutions to their problems through counselling and once the situation improves they stop doing what was necessary to achieve the results, again with horrendous consequences. We need to keep vigilant about unacceptable changes in our wellbeing and once we find solutions then also maintain vigilance to ensure that improvements are not lost.

the last time I saw them they had after a few sessions
resolved their difficulties and made a checklist of what
they had done to sort things out so that they could
continue what worked and maintain the improvement
intelligent, successful, people meant commitment to
the system for success, or so you’d think
why should they be any different to the rest of us
a human frailty is becoming overconfident
and stopping what works
it can happen to me too if I don’t maintain
the vigilance and even then I am prone!
a year later they were back almost ready to divorce and
full of resentment, anger, defensiveness and vengeance
they had time to each tell their version of the problem
having expressed themselves we looked at their checklist
maybe one or two items had been maintained
but the rest had been grossly neglected
although it seemed hopeless we began again
and bit by bit things got turned around
after a few sessions they were back on track
back to basics always works yet we have
a tendency to complicate things

Soulmates or love addiction?

There is a fine line between having a loving relationship and love addiction. A loving relationship involves soulmates having a fulfilling life based on like-minded friendship. Love addiction is a relationship that brings extreme highs and lows with unmanageablity as the distinctive characteristic which gets progressively worse. Soulmates or love addiction, which will it be for you?

he had experienced great unhappiness
and yet mad passionate love with her
he was finally free of that madness
and it hadn’t been easy to achieve!
in therapy he tried to understand
why he felt disinterested with his new love
and yet he knew he loved her deeply
it took a while for him to realise
that he needed to adjust to the reality of love
in other words: soulmates or love addiction?
he finally understood the difference
and since then his life has been
what he’s always hoped for and yet
thought he’d never have
together with serenity at last
as well as three adorable young children to love

Sex and love addiction

So many people nowadays suffer with sex and love addiction and yet are in denial about it. They are seen as rogues and the behaviour is condoned. Or it seems easier for people to believe that a person is worthless because they lose control of their desires for sex and love. Whereas if there was more understanding that this behaviour is a disorder or disease which can be treated, then it could be corrected. It is described simply by the need to have sex and love in order to get a thrill, only to feel guilty afterwards because the consequences are bleak and people are hurt. At times it is life-threatening when those involved are careless too.

he said that he couldn’t understand
what happened and that he took such a chance
he had not intended to have a one night stand
and yet he felt driven and what’s more
he didn’t use a condom
now he was stressed as he may have
signed his own death warrant
this was not the first time this had happened
and yet he is a good looking, successful guy
any number of women are attracted to him
something had to be done and right away
he agreed he couldn’t do it alone and needed help
he’d been to have his Aids test and
now he made a commitment to go to
Sex and Love Addicts Anonymous which
he had resisted for so long
when I saw him next he seemed
more serene and spoke about how
surprised he was at meeting people
he respected and some who had
been through the same thing as he had
but were free of the madness
and now he felt there was hope for him
I saw him again one year later and he
was in recovery and grateful for his health
emotional physical and spiritual

[SLAA Sydney telephone: 9358 6605]

Touch to stay alive

Without touch babies have been known to die, that’s why attachment in the early years of childhood is so important. We need touch to stay alive. To touch and be touched is the necessity of life. That’s why one of the methods of torture or punishment has been isolation, it can make a person go crazy. It is important to teach children from a young age that sulking (withdrawal) is counter-productive to having their needs and wants met. Communicating what they are feeling is vital to their own wellbeing and future relationship development.

they argued constantly
from early morning and then
when he came home from work
late into the night
sometimes they wouldn’t talk for days
sulking so badly that you could
cut the air with a knife, so to speak
I often wondered how they managed
to get through the day in such an
atmosphere of bitterness and misery
with no touching
then after 13 years they divorced
and took their dysfunctional behaviour
to their new separate relationships
which did not last long either
we need touch to stay alive
in more ways than one

Developing friendships

Some of us find it easy to reach out to others and some of us don’t. All it takes is for one person to reach out a few times and the other will reciprocate eventually. That’s the process of developing friendships. From then on the friendship becomes stronger and, despite natural moments of conflict, it becomes a lifelong relationship.

when I looked back on my closest friendships
to find out how they became that way
I discovered that I am somewhat slack in
contacting people I like because I am not
that keen on telephoning people although
I am eager to meet them once they phone me
nevertheless, once we become friends I reciprocate
the telephoning because I appreciate the effort they
have put into contacting me so I make the effort back
that’s been the birth of developing friendships with
some of my dearest friends