Friday, February 28, 2014

RARE DAY














Limb girdle muscular dystrophy encompasses a group of rare disorders and that makes it a rare disease. Many people are suffering with rare conditions/diseases.

A rare disease is also referred to as an orphan disease, is any disease that affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear.

I have to salute all who made this day happen for the first time in Kenya, the public is becoming more aware of rare diseases especially those that are not visible, you can't see them with your naked eyes.

http://www.rarediseaseday.org/stories/113

Friday, February 14, 2014

WILL YOU BE MY VALENTINE


 Today being February the 14th, I have one thing only to say. God has been so faithful to me, unlike many people who today are yearning for love either from family members or a partner, He has blessed me with both. I am not afraid to say again He is faithful and merciful.

I dedicate this blessed day to all living with disabilities and rare diseases, I dedicate this day to all the sickle cell warriors especially my husband who through difficult and low moments in his life he has never failed to say the word I LOVE YOU. Oh! I said earlier I have only one thing to write but hey, when you have joy in your heart you want the whole world to share the joy with you.


HAPPY VALENTINES MY LOVE.


 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres. 8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away.

Wednesday, February 12, 2014

DISABLED A POEM BY Wilfred Owen



Disabled
He sat in a wheeled chair, waiting for dark,
And shivered in his ghastly suit of grey,
Legless, sewn short at elbow. Through the park
Voices of boys rang saddening like a hymn,
Voices of play and pleasure after day,
Till gathering sleep had mothered them from him.

About this time Town used to swing so gay
When glow-lamps budded in the light-blue trees
And girls glanced lovelier as the air grew dim,
— In the old times, before he threw away his knees.
Now he will never feel again how slim
Girls' waists are, or how warm their subtle hands,
 
All of them touch him like some queer disease.
There was an artist silly for his face,
For it was younger than his youth, last year.
Now he is old; his back will never brace;
He's lost his colour very far from here,
Poured it down shell-holes till the veins ran dry,
And half his lifetime lapsed in the hot race,
And leap of purple spurted from his thigh.
One time he liked a bloodsmear down his leg,
After the matches carried shoulder-high.
It was after football, when he'd drunk a peg,
He thought he'd better join. He wonders why . . .
Someone had said he'd look a god in kilts.

That's why; and maybe, too, to please his Meg,
Aye, that was it, to please the giddy jilts,
He asked to join. He didn't have to beg;
Smiling they wrote his lie; aged nineteen years.
Germans he scarcely thought of; and no fears
Of Fear came yet. He thought of jewelled hilts
For daggers in plaid socks; of smart salutes;
And care of arms; and leave; and pay arrears;
Esprit de corps; and hints for young recruits.
And soon, he was drafted out with drums and cheers.

Some cheered him home, but not as crowds cheer Goal.
Only a solemn man who brought him fruits
Thanked him; and then inquired about his soul.
Now, he will spend a few sick years in Institutes,
And do what things the rules consider wise,
And take whatever pity they may dole.
To-night he noticed how the women's eyes
Passed from him to the strong men that were whole.
How cold and late it is! Why don't they come
And put him into bed? Why don't they come?
   Wilfred Owen
 
Wilfred Edward Salter Owen MC (1893 to 1918) was an English poet and soldier. He was born in Oswestry, Shropshire in England. He was one of the leading poets of the First World War. His shocking, realistic war poetry makes him stand apart. Owen's poem 'Disabled' explores the effects of war on those who live through it. It is about a veteran soldier who lost his limbs in a battle and after that how his life completely changed, his hopes vanished and his accomplishments rendered useless. This poem was written when Owen was in Craiglockhart War Hospital being treated for shell shock.

Monday, February 10, 2014

HIRING A CAREGIVER

For all who are now familiar with muscular dystrophy, we know that due to a defective gene the muscles degenerate progressively depending on each individual affected. A friend of mine asked these question just the other day; When is the right time to hire a caregiver?

In Kenya very few colleges offer care giving courses and when it comes to hiring one you have to go back to your rural home, talk to some relatives to look for and get one for you. It is never an easy process. I had no problem doing my own things and due to weakening muscles I've been forced to swallow my pride and give in to the fact that my husband cannot assist me in everything even if he wanted to, I have to let him be my companion first.

Every time I change a care giver I have to give a brief description of  the kind of person I am looking for and physical strength is always on top of the list. Here we do not have the disability lifts which aide in standing up that is why physical strength of the care giver is a must. Another thing I always ask is the height of the care giver because I am a tall lady and when it comes to standing up a short person will use a lot of energy to lift me and it is always a struggle.

The only problem with hiring a non professional is that you have to teach them everything about your condition and some don't get it and after a few weeks they resign leaving you with so much stress of how you are going to face the following day. What I normally do now a days before I fully hire a carer, I give them a one week probation and if one passes the test I hire them. I hate being disappointed so I have to take every precaution necessary.

  Hiring a care giver is a personal choice and each and every one of us know exactly when and where the shoe pinches the most. I decided on hiring my first care giver four years ago, I am forever grateful for all the carers who have helped me and shared my journey of LIFE WITH MUSCULAR DYSTROPHY.


Acts 20:35 In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: 'It is more blessed to give than to receive.' "

Wednesday, February 5, 2014

OH NO!

Ever since I was nine years old I have been having this one type of headache that won't let me be. It can occur anytime of day or wake me up at night. At first I used to think my eyes were causing it because I am short sighted but nooo! this type of headache is called a migraine.

 According to the Mayo clinics definition of a migraine it is a headache that can cause intense throbbing or a pulsing sensation in one area of the head and is commonly accompanied by nausea, vomiting, and extreme sensitivity to light and sound.
Migraine attacks can cause significant pain for hours to days and be so severe that all you can think about is finding a dark, quiet place to lie down.
Some migraines are preceded or accompanied by sensory warning symptoms (aura), such as flashes of light, blind spots, or tingling in your arm or leg.

Before the headache comes I normally get these flashes and a vision of something like a zigzag line rotating in my eyes, it can be on the left or on the right after that everything that had a good scent fades and then nausea follows. It is a very bad feeling, years back the migraine was so severe that when it came I had to switch off all the lights go to a dark quite room, carry a basin with water and place it near the bed just in case I needed to vomit. If I was in school, I could either be given permission to go home or rest a while at the school's sick bay.

Yesterday I had one but it was not as bad as it used to be and I thank God for thus far he has brought me, and for His healing touch. I no longer use OH NO! a migraine is coming and throw curse words all over the room, I just take a moment and rest for some hours and it works for me.  


Romans 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Monday, February 3, 2014

A SPECIAL DAY IT IS.

I feel extremely happy and blessed today, everything so far seems to be working in my favour. It is the third day of February...It is my birthday today, and even as I celebrate my birthday creating awareness about the muscle wasting condition lingers at the back of my head.

It has been 18 years since my diagnosis, I have seen my muscle waste away, things I loved to do are now getting harder and harder but that's not the end, right! I have a new passion although my mobility is limited, I have decided that through the internet I will let every one know about MD and the research that has been taking place world wide.

The symptoms of LGMD can easily be seen because most of them are physical and here is a look at some of them:

The first sign is pelvic muscle weakness (difficulty standing from a sitting position without using the arms, difficulty climbing stairs). The weakness starts in childhood to young adulthood. When I started experiencing these symptoms at first we i.e my family members and I thought it was a weight issue, that I was becoming overweight so we ignored the difficulty standing up part. I had problem with steps, climbing steps/stairs became a nightmare in fact just the other day I was reliving the past and I remembered there was a particular time when I could climb stairs on reverse because I found it was easier to climb stairs that way.
Other symptoms include:
  • Abnormal, sometimes waddling, walk
  • Joints that are fixed in a contracted position (late in the disease)
     
  • Large and muscular-looking calves (pseudohypertrophy), which are not actually strong. (mazgwembe that is what we call them here in Kenya) Having enlarged calves invited bullying and name calling in primary school for me, that's a story for another day.

  • Loss of muscle mass, thinning of certain body parts
  • Low back pain
     
  • Palpitations or passing-out spells-This is another sign that I have been experiencing lately and it scares me because passing-out spells occur even when I am sitted. I told my sister once and she just laughed in fact she thinks I am paranoid. Anyway I don't blame her  because she doesn't know much about MD.

  • Shoulder weakness
  • Weakness of the muscles in the face (later in the disease)
  • Weakness in the muscles of the lower legs, feet, lower arms, and hands (later in the disease) 
     
    Apart from all the negative things MD has brought in my life, there is always the good part in every story, my family members are always a stone throw away to come to my rescue whenever I need help and my relationship with my savior Jesus Christ is growing stronger and that's the better part. I celebrate my 32nd year on earth and still praying that a cure is found in this life time so that we that have the muscle wasting gene cannot pass it on to our children.
     
     Psalm 27:4
    One thing I ask from the LORD, this only do I seek: that I may dwell in the house of the LORD all the days of my life, to gaze on the beauty of the LORD and to seek him in his temple.
    Happy Birthday to me.

Follow by Email